My mom has been on her "own" for 1 week....one week ago today I took her to the doctor so she could be "rid" of everything.....I have worked hard at letting her be. It is has been strange picking my kids up again at their regular times, making dinner and being home on the weekends.
I talked to my mom everyday at least once. She seems good, still gets a little forgetful but seems to be remembering to take her meds and eat. She still isn't super hungry so she still doesn't eat much. Hopefully that will increase as the nutrients will give her strength and keep her head clearer. She still uses the oxygen at home but not when she goes out. She does not wear the mask at all. We have returned the hospital bed and wheelchair...she is happy to be in her own bed.
She has very little memory about any of the hospital stuff but I guess that is sort of normal. Next Tuesday I will be taking her to neurology so be assessed...I am hoping that they do an EEG so we will know it there has been any permanent damage.
I ask her if she is happy in her solitude and she says that visits would be nice. I told her that I thought she may have scared a few people off as she was so determined to be "home alone"...so I am opening the invitation to visit Lis. If she doesn't answer she is probably asleep...but she has not been sleeping so much during the day these days.
Hope everyone is well out there. Take care until next time. I am hoping to get my mom to read this at some point so she can see her journey for herself.
Thursday, May 24, 2012
Sunday, May 20, 2012
Days 60-64
May 16-20
This week has been about trying to help my mom realize that her helpers were here to help her....she has really rebelled against help. Not just people help from people but the help of the walker, oxygen and mask. I have seen my mom become very angry when anyone tries to "remind" her what she "should" be doing, this anger has been rough to watch not to mention receive. She argues with me when I remind what the doctor or therapist has said that she is to do....if I correct her it upsets her. I finally called the doctor who fit my mom in the next morning, Thursday.
My mom has been getting better. Everyday she looks more and more like herself. She still has a bad appetite and is not eating very much but she will drink an Ensure here and there. She still gets a little unsteady though and needs help moving from the shower but otherwise is doing quite well. The doctors have been worried about her memory and whether or not she has sustained any brain damage. I have seen her memory get better the longer she is home but I really needed to know if she was ok cognitively. So Deborah (Kaiser nurse and my friend) came over and did a cognitive test with my mom. I listened from the other room (as I was chasing my kids around) and she seems to be answering the questions well. It took about 45 minutes and they were done and Deborah told her that she did so well..that she had some short term memory recall but that could be due to normal aging. She told my mom that it is important for her to "use" her brain with word games and reading and that it was also important to eat well and exercise. I know my mom heard her....and Deborah tried to get my mom to do some exercises buy laying on the floor herself and demonstrating how to do them...my mom said that she would do them tomorrow. That seems to be a standard answer especially when we were working on the mask. Deborah's visit help me to make the decisions that I was being forced into anyways.
I took the day off to take my mom to the doctor. I had not spoken to the doctor directly but his staff knew that my mom was having a hard time and was feeling frustrated with the whole thing (people in her house among other things). So the doctor came in and asked my mom why she was there....I had a pen and paper ready to take notes because part of the problem is that my mom would hear one thing and I heard another and when I corrected her she would get so upset with me (I am just trying to do the right thing)....My mom told the doctor that she wants to get "rid of everything" and he asked "what's everything?" and she pointed to the walker and the oxygen and told him about the mask (that she has tried really hard to wear it but she just can't stand it) - I had taken her to the mask place to have her try different ones on and talk to the respiratory therapist and I thought we had "the one" but obviously not - So the doctor told her that she can not force her to use anything that it is against the law for him to force her to do anything - he can only advise her and tell her the pros and cons to the decisions. She told him that she didn't want all the people in her house (I understand this but we were told not to leave her alone for awhile so we have pieced it together with paid folks and friends and me to keep her safe). So the doctor told her that he felt that she should not be alone all the time that there should be people checking on her, he told her that she should wear the mask at least part of the time as a little bit is better than no time, he checked her oxygen levels while she was on the Oxygen then took it off then had her walk and took her levels again....the numbers were good so he told her to try to not wear it but if she felt light headed or short of breath then she should wear it and that she SHOULD wear it while she is sleeping. Then she asked about driving.....he said absolutely no driving and she asked how long until she could again and he said that it would be at least 3 months and maybe 6 months since she had a seizure..it is the law. I looked this up and sure enough it said 6 months but that it could possibly be 3 months. So my mom left the appointment without oxygen and walked to the car....with her walker. We met Evie (our awesome careperson) in the waiting room and headed for Starbucks...my mom was in a much better mood after that appointment...she got what she wanted...I just hope it is all right. That day my mom let everyone go...she didn't need anymore help...so everyone stopped.
Thursday....my kids and I came over as the physical therapist was coming over. My mom was in her room with me and had just decided that she wanted to wear the oxygen as she felt a little short of breath so she put the canula on. I was in her closet trying to help her figure out her clothes. The phone rang and my mom jumped up...I stayed in the closet and heard a crash and Michael yell for me.....I knew that my mom must have fallen. Sure enough - my heart was racing when I ran out to the living room to find Lis lying on the floor...she had tripped over the oxygen cart that was laying on the floor. I checked her out and helped her sit up and then get up and sit in her chair....I found no marks...she said that her elbow and shoulder hurt but there was no swelling..I checked out her head as she hit that too....there was no mark. A few minutes later the therapist arrived and I told her that she had just fallen and she said, very casually, "I'm not surprised" - wow I thought her reaction would have been different. BUT she had been concerned all along how my mom wasn't careful with her movements.....makes me wonder if she will be falling again.
Friday - first day home alone.....I think my mom loved it - we showed up about 4:30 and Deborah about 5:00 we left her about 7:30 and she was on her way to bed - we did not stay the night.....she wanted to be alone so I honored that especially after her assessment showed what it did...I would not have been able to let her stay alone if I knew/thought that she wasn't in her right mind.
Saturday I talked to her in the late morning and we talked about what time I would pick her up for the wedding reception that we were going to. I told her I would call on my way but that I would be there about 3:30 as the party started at 4:00 at the club. I arrived to my mom sitting on her bed trying to get ready and she told me that everything takes so much longer now......we left and went to the club..everyone was excited to see her and she sat down in a chair and talked with people as I ran around. I had the oxygen in the car just in case but she never needed it. We went back to her house for a little while then I went home to my own house and we had decided that we would get together for lunch on Sunday. We left her house about 8:00.
Sunday....it has now been 2 months and 5 days since this all began.....wild. She called about 10:30 wondering where we were I told her that Malena was napping and we would be on our way when she woke up...great she said call on our way. We went to the club for lunch...she said hi to many people and they were all happy to see her. When we got home from the club Shirley came down for a few minutes and then we headed out as my mom was tired. She called me later and said that she had not taken a nap and was going to go to bed early.
I know that I am not writing everyday...things a cruising along now and my mom has what she wanted - a quiet house. Phone calls would be good and some visits if you want to - she talks more and more like herself.
This week has been about trying to help my mom realize that her helpers were here to help her....she has really rebelled against help. Not just people help from people but the help of the walker, oxygen and mask. I have seen my mom become very angry when anyone tries to "remind" her what she "should" be doing, this anger has been rough to watch not to mention receive. She argues with me when I remind what the doctor or therapist has said that she is to do....if I correct her it upsets her. I finally called the doctor who fit my mom in the next morning, Thursday.
My mom has been getting better. Everyday she looks more and more like herself. She still has a bad appetite and is not eating very much but she will drink an Ensure here and there. She still gets a little unsteady though and needs help moving from the shower but otherwise is doing quite well. The doctors have been worried about her memory and whether or not she has sustained any brain damage. I have seen her memory get better the longer she is home but I really needed to know if she was ok cognitively. So Deborah (Kaiser nurse and my friend) came over and did a cognitive test with my mom. I listened from the other room (as I was chasing my kids around) and she seems to be answering the questions well. It took about 45 minutes and they were done and Deborah told her that she did so well..that she had some short term memory recall but that could be due to normal aging. She told my mom that it is important for her to "use" her brain with word games and reading and that it was also important to eat well and exercise. I know my mom heard her....and Deborah tried to get my mom to do some exercises buy laying on the floor herself and demonstrating how to do them...my mom said that she would do them tomorrow. That seems to be a standard answer especially when we were working on the mask. Deborah's visit help me to make the decisions that I was being forced into anyways.
I took the day off to take my mom to the doctor. I had not spoken to the doctor directly but his staff knew that my mom was having a hard time and was feeling frustrated with the whole thing (people in her house among other things). So the doctor came in and asked my mom why she was there....I had a pen and paper ready to take notes because part of the problem is that my mom would hear one thing and I heard another and when I corrected her she would get so upset with me (I am just trying to do the right thing)....My mom told the doctor that she wants to get "rid of everything" and he asked "what's everything?" and she pointed to the walker and the oxygen and told him about the mask (that she has tried really hard to wear it but she just can't stand it) - I had taken her to the mask place to have her try different ones on and talk to the respiratory therapist and I thought we had "the one" but obviously not - So the doctor told her that she can not force her to use anything that it is against the law for him to force her to do anything - he can only advise her and tell her the pros and cons to the decisions. She told him that she didn't want all the people in her house (I understand this but we were told not to leave her alone for awhile so we have pieced it together with paid folks and friends and me to keep her safe). So the doctor told her that he felt that she should not be alone all the time that there should be people checking on her, he told her that she should wear the mask at least part of the time as a little bit is better than no time, he checked her oxygen levels while she was on the Oxygen then took it off then had her walk and took her levels again....the numbers were good so he told her to try to not wear it but if she felt light headed or short of breath then she should wear it and that she SHOULD wear it while she is sleeping. Then she asked about driving.....he said absolutely no driving and she asked how long until she could again and he said that it would be at least 3 months and maybe 6 months since she had a seizure..it is the law. I looked this up and sure enough it said 6 months but that it could possibly be 3 months. So my mom left the appointment without oxygen and walked to the car....with her walker. We met Evie (our awesome careperson) in the waiting room and headed for Starbucks...my mom was in a much better mood after that appointment...she got what she wanted...I just hope it is all right. That day my mom let everyone go...she didn't need anymore help...so everyone stopped.
Thursday....my kids and I came over as the physical therapist was coming over. My mom was in her room with me and had just decided that she wanted to wear the oxygen as she felt a little short of breath so she put the canula on. I was in her closet trying to help her figure out her clothes. The phone rang and my mom jumped up...I stayed in the closet and heard a crash and Michael yell for me.....I knew that my mom must have fallen. Sure enough - my heart was racing when I ran out to the living room to find Lis lying on the floor...she had tripped over the oxygen cart that was laying on the floor. I checked her out and helped her sit up and then get up and sit in her chair....I found no marks...she said that her elbow and shoulder hurt but there was no swelling..I checked out her head as she hit that too....there was no mark. A few minutes later the therapist arrived and I told her that she had just fallen and she said, very casually, "I'm not surprised" - wow I thought her reaction would have been different. BUT she had been concerned all along how my mom wasn't careful with her movements.....makes me wonder if she will be falling again.
Friday - first day home alone.....I think my mom loved it - we showed up about 4:30 and Deborah about 5:00 we left her about 7:30 and she was on her way to bed - we did not stay the night.....she wanted to be alone so I honored that especially after her assessment showed what it did...I would not have been able to let her stay alone if I knew/thought that she wasn't in her right mind.
Saturday I talked to her in the late morning and we talked about what time I would pick her up for the wedding reception that we were going to. I told her I would call on my way but that I would be there about 3:30 as the party started at 4:00 at the club. I arrived to my mom sitting on her bed trying to get ready and she told me that everything takes so much longer now......we left and went to the club..everyone was excited to see her and she sat down in a chair and talked with people as I ran around. I had the oxygen in the car just in case but she never needed it. We went back to her house for a little while then I went home to my own house and we had decided that we would get together for lunch on Sunday. We left her house about 8:00.
Sunday....it has now been 2 months and 5 days since this all began.....wild. She called about 10:30 wondering where we were I told her that Malena was napping and we would be on our way when she woke up...great she said call on our way. We went to the club for lunch...she said hi to many people and they were all happy to see her. When we got home from the club Shirley came down for a few minutes and then we headed out as my mom was tired. She called me later and said that she had not taken a nap and was going to go to bed early.
I know that I am not writing everyday...things a cruising along now and my mom has what she wanted - a quiet house. Phone calls would be good and some visits if you want to - she talks more and more like herself.
Tuesday, May 15, 2012
Days 56-59
Friday through Tuesday
On Friday my mom called me a couple of times on the phone...I was surprised how her voice changed - she sounds more and more like herself. I can still hear a little something in her voice and she still gets a little unclear about memories of events of the day but overall is sounding like Lis. She forgets little things like what someone said...and it seems like she hears and retains certain parts, not all parts. Other than the canula in her nose she looks like herself too.
The weekend was pretty uneventful.....although my mom seems a bit short tempered and very frustrated that she has to have "helpers" around all day...she believes that she should be able to be alone. When I try to talk to her about this she just gets angry. The physical therapist told her that she wouldn't be able to be alone until she could be safe in the way she moves around the house. But my mom sometimes thinks that she gets to decide when she can be alone and I tell her that it is up to her doctor. She also needs to do her exercises at least 2x a day....she has not done them once unless the therapist is there. I asked her today about doing them when she is home alone and she said that she probably wouldn't. She did walk to the mailbox today.
She still gets a little confused about all kinds of different things...she would disagree but it happens...like not be able to feel the canula and forgetting who is coming when or things that were talked about and the reality of some things. She argues very easily but thinks that I am the one....I have learned this week why they have support groups for care givers..it is not easy and a lot of times the patient takes it out on the care giver. I do give it back to her though as I get frustrated too.
It is also crowded at my mom's there are 4 of us and 1 of her...her house is not kid safe........so I am usually running around trying to keep it all rolling....
Yesterday (Monday) I took my mom down to talk to the respiratory therapist about her mask....she really hates it and does not want to wear it. The gal tried them on her and she settled on one...the RT fixed the mask to fit her so that she could put it on by herself and we decided to leave the canula in so that when she did take the mask off she would still have the oxygen. My mom asked her "how long do I have to wear it?" and the RT told her a minimum of 4 hours BUT all night would be best. I know my mom only heard the 4 hours....last night she took it off at some point and the canula too...so much for that idea.
Monday evening she attended her pow-wow at the pool with all the women in her condo complex and there I left her sitting with her friends until Sonia arrived awhile later.
Today (Tuesday) we went to see my 99 year old grandmother (my dad's mom). My mom used the walker only - no wheelchair. My grandmother took a minute but then recognized us...we sat with her during her music sing-a-long, I love just observing all the patients. We stayed about 45 minutes and then it was home again for Macelita who was coming at 3 and I had to get going to get my kids.
I found out today that my mom has told our main help, Evie that Friday will be her last day....um let's see what the medical people say. I am not going to lie that I feel very frustrated with her attitude and am trying to be patient but it is hard. On my way home I called her and told her to make a list of all of her concerns - the mask, the oxygen, home alone, medication, etc. I will be going there when Virginia (nurse) is there just to help her get the information that she wants.
Until next time...........good night
On Friday my mom called me a couple of times on the phone...I was surprised how her voice changed - she sounds more and more like herself. I can still hear a little something in her voice and she still gets a little unclear about memories of events of the day but overall is sounding like Lis. She forgets little things like what someone said...and it seems like she hears and retains certain parts, not all parts. Other than the canula in her nose she looks like herself too.
The weekend was pretty uneventful.....although my mom seems a bit short tempered and very frustrated that she has to have "helpers" around all day...she believes that she should be able to be alone. When I try to talk to her about this she just gets angry. The physical therapist told her that she wouldn't be able to be alone until she could be safe in the way she moves around the house. But my mom sometimes thinks that she gets to decide when she can be alone and I tell her that it is up to her doctor. She also needs to do her exercises at least 2x a day....she has not done them once unless the therapist is there. I asked her today about doing them when she is home alone and she said that she probably wouldn't. She did walk to the mailbox today.
She still gets a little confused about all kinds of different things...she would disagree but it happens...like not be able to feel the canula and forgetting who is coming when or things that were talked about and the reality of some things. She argues very easily but thinks that I am the one....I have learned this week why they have support groups for care givers..it is not easy and a lot of times the patient takes it out on the care giver. I do give it back to her though as I get frustrated too.
It is also crowded at my mom's there are 4 of us and 1 of her...her house is not kid safe........so I am usually running around trying to keep it all rolling....
Yesterday (Monday) I took my mom down to talk to the respiratory therapist about her mask....she really hates it and does not want to wear it. The gal tried them on her and she settled on one...the RT fixed the mask to fit her so that she could put it on by herself and we decided to leave the canula in so that when she did take the mask off she would still have the oxygen. My mom asked her "how long do I have to wear it?" and the RT told her a minimum of 4 hours BUT all night would be best. I know my mom only heard the 4 hours....last night she took it off at some point and the canula too...so much for that idea.
Monday evening she attended her pow-wow at the pool with all the women in her condo complex and there I left her sitting with her friends until Sonia arrived awhile later.
Today (Tuesday) we went to see my 99 year old grandmother (my dad's mom). My mom used the walker only - no wheelchair. My grandmother took a minute but then recognized us...we sat with her during her music sing-a-long, I love just observing all the patients. We stayed about 45 minutes and then it was home again for Macelita who was coming at 3 and I had to get going to get my kids.
I found out today that my mom has told our main help, Evie that Friday will be her last day....um let's see what the medical people say. I am not going to lie that I feel very frustrated with her attitude and am trying to be patient but it is hard. On my way home I called her and told her to make a list of all of her concerns - the mask, the oxygen, home alone, medication, etc. I will be going there when Virginia (nurse) is there just to help her get the information that she wants.
Until next time...........good night
Monday, May 14, 2012
Monday May 14
I am writing to promise that I will post tonight....it has been a long weekend and things are going well. More later..........
Wednesday, May 9, 2012
Day 54 and 55
Tuesday.....Well I am a day late on getting this post done. I went to work and Evie was with my mom from 7-1 - thanks Evie. Evie told me that my mom had slept in until about 11'ish so she had eaten late breakfast. I got there about 12:45 as my mom had a doctors appointment at 1:30pm.
I could hear the radio in my mom's room - a familiar sound both of my parents would turn the radio on loud while they got dressed and ready. I had not heard that radio since my mom had been home....that must mean that she is feeling more like herself. I opened her door to see her plop down on her bed in a big huff....she said that it was hard to get anything done. She was trying to get dressed and couldn't figure out how not to get tangled up in the oxygen cord. I helped her get her street clothes on so we could get going. My mom forgets that it takes longer to get ready these days...so we run a little late wherever we go. Confusion was still present as she was not sure of the day or time but it seemed a bit better than Monday.
We had an appointment at orthopedics to double check her hand (she had a hair line fracture from her initial fall March 16) - the ortho doctor said that he thought she was healed and didn't want her to wear the splint anymore and gave her the green light for her physical therapist...it was a 10 minute situation and my mom was so tired she was falling asleep in the office. We got home and she went right to bed and I headed home.
I called to check on her in the evening and Erika told me that she was in the refrigerator looking for something to eat....she was craving spinach...I brought her some.
Wednesday.....I arrived at 8:30'ish to find Penny sitting and waiting and my mom asleep. I talked with Penny a little and then went and tried to get my mom up. She didn't want to get up but I told her that we had to be at the doctor by 10:30. She asked why I had scheduled an appt. so early...I told her that I have kids I have to pick up and don't have so much time to get it all done. She wanted to get up so she could read the paper and just sit a little. I went out and put together a breakfast and went back in to get her up. She finally got up and came and sat down. It is funny but I run around trying to get stuff done...she is always telling me to sit down....I am watching the clock and reminding her that it takes longer for her to get ready now...but she just kept sitting there - the first appointment was at 10:30 and it was now 9:45 and my mom still wanted to take a shower. So she finished her pills and we were rolling...we made it to the parking garage of Kaiser at 10:25am, I park and my mom says "we have 2 minutes now"....yea I know that's why I said we had to hurry...luckily the doctors are rarely on time.
Dr. Koga my mom's general......came in and was so impressed with how my mom looked. He said that he had not expected her to look this good. She was surprised that she was upright. He said that not many people live through this and make it. He talked to my mom about the importance of the (dreaded) mask and told her that she must wear it....she listened and I told her that I would try to get ahold of someone who could show her everything and try different masks on. He also told her how important it is for her to take all her meds (she had refused her bedtime meds and I was frustrated because no one called me to tell me) that all of the meds were important right now and she had to be careful to take them. He also told her that right now she someone watching over her 24/7 to make sure she is alright. That hopefully at some point she could be alone again but not right now. He said that he blood pressure was great and her breathing sounded really good. Hopefully if she does what she is told she can get off the oxygen and maybe the Bi-PAP (my mom calls it the BeeBop). She did tell Erika that she HAD to wear it tonight. Maybe it is finally sinking in. He wants to see her again in 1 month and her ordered some blood work for us to complete today...we did.
We then went and saw Dr Brawley (the surgeon who saved my mom) he also was amazed how good she looked and told her that he was going to email everyone who was in the O.R. on March 16th and tell them how great she looks. He wants to see her again in 3 months.
After we left Kaiser we talked about getting something to eat before we went home....how did the club sound......Great...we went to the club for lunch and Shirley joined us. My mom was very clear and wide awake there...talking to us a lot and following conversation very well...she was joking a lot with John (the waiter) and talking details with us. Different people came up to her and welcomed her back with hugs and kisses. We all ate our lunch my mom finished the majority of hers and we went home. My mom really ready for a nap now. Kathy the PT would be there soon so she had to hurry to get a nap in. After today I feel like (and can see) this will all work out and my mom will (most likely) be back to her (close) self soon and she will get to stay home alone. We shall see how it all goes.
Tonight they were eating some yummy potato soup made for them by her neighbor...so nice.
I could hear the radio in my mom's room - a familiar sound both of my parents would turn the radio on loud while they got dressed and ready. I had not heard that radio since my mom had been home....that must mean that she is feeling more like herself. I opened her door to see her plop down on her bed in a big huff....she said that it was hard to get anything done. She was trying to get dressed and couldn't figure out how not to get tangled up in the oxygen cord. I helped her get her street clothes on so we could get going. My mom forgets that it takes longer to get ready these days...so we run a little late wherever we go. Confusion was still present as she was not sure of the day or time but it seemed a bit better than Monday.
We had an appointment at orthopedics to double check her hand (she had a hair line fracture from her initial fall March 16) - the ortho doctor said that he thought she was healed and didn't want her to wear the splint anymore and gave her the green light for her physical therapist...it was a 10 minute situation and my mom was so tired she was falling asleep in the office. We got home and she went right to bed and I headed home.
I called to check on her in the evening and Erika told me that she was in the refrigerator looking for something to eat....she was craving spinach...I brought her some.
Wednesday.....I arrived at 8:30'ish to find Penny sitting and waiting and my mom asleep. I talked with Penny a little and then went and tried to get my mom up. She didn't want to get up but I told her that we had to be at the doctor by 10:30. She asked why I had scheduled an appt. so early...I told her that I have kids I have to pick up and don't have so much time to get it all done. She wanted to get up so she could read the paper and just sit a little. I went out and put together a breakfast and went back in to get her up. She finally got up and came and sat down. It is funny but I run around trying to get stuff done...she is always telling me to sit down....I am watching the clock and reminding her that it takes longer for her to get ready now...but she just kept sitting there - the first appointment was at 10:30 and it was now 9:45 and my mom still wanted to take a shower. So she finished her pills and we were rolling...we made it to the parking garage of Kaiser at 10:25am, I park and my mom says "we have 2 minutes now"....yea I know that's why I said we had to hurry...luckily the doctors are rarely on time.
Dr. Koga my mom's general......came in and was so impressed with how my mom looked. He said that he had not expected her to look this good. She was surprised that she was upright. He said that not many people live through this and make it. He talked to my mom about the importance of the (dreaded) mask and told her that she must wear it....she listened and I told her that I would try to get ahold of someone who could show her everything and try different masks on. He also told her how important it is for her to take all her meds (she had refused her bedtime meds and I was frustrated because no one called me to tell me) that all of the meds were important right now and she had to be careful to take them. He also told her that right now she someone watching over her 24/7 to make sure she is alright. That hopefully at some point she could be alone again but not right now. He said that he blood pressure was great and her breathing sounded really good. Hopefully if she does what she is told she can get off the oxygen and maybe the Bi-PAP (my mom calls it the BeeBop). She did tell Erika that she HAD to wear it tonight. Maybe it is finally sinking in. He wants to see her again in 1 month and her ordered some blood work for us to complete today...we did.
We then went and saw Dr Brawley (the surgeon who saved my mom) he also was amazed how good she looked and told her that he was going to email everyone who was in the O.R. on March 16th and tell them how great she looks. He wants to see her again in 3 months.
After we left Kaiser we talked about getting something to eat before we went home....how did the club sound......Great...we went to the club for lunch and Shirley joined us. My mom was very clear and wide awake there...talking to us a lot and following conversation very well...she was joking a lot with John (the waiter) and talking details with us. Different people came up to her and welcomed her back with hugs and kisses. We all ate our lunch my mom finished the majority of hers and we went home. My mom really ready for a nap now. Kathy the PT would be there soon so she had to hurry to get a nap in. After today I feel like (and can see) this will all work out and my mom will (most likely) be back to her (close) self soon and she will get to stay home alone. We shall see how it all goes.
Tonight they were eating some yummy potato soup made for them by her neighbor...so nice.
Tuesday, May 8, 2012
Day 53
Monday....last night Erika stayed with her, she woke up several times just to check on my mom. Erika left about 7am and Shirley arrived. Shirley called me to say that the physical therapist (PT) wanted to come assess my mom this morning. WOW we were supposed to go and get her hair done...but this was more important. I arrived about 8:30 with latte's in hand. My mom was still sleeping.
I got my mom up so that she could get her pills, a little coffee and a bite to eat before Kathy (PT) would be there. I had called a told the hair people that we would be a little late - they said no problem. I wanted to try and get a shower for my mom....but right now things don't move quite that fast...we started the water but Kathy arrived before that could happen.
Kathy talked with my mom about all that has happened to her in the last 7 weeks. My explained the best she could looking to me to fill in a few blanks. Then Kathy wanted to see her move...so my mom got up and walked with her walker and had to show her how she got in bed....once back in bed she showed her how to do some strengthening exercises that she wants her to do 2x a day as well as walking around the house.. Kathy set her next appointment for Wednesday and left. I hurried my mom into the shower and helped her where she needed it. She did good and I know it felt good to get a good shower in her own shower. OK we had to get going so I got her in the wheelchair, hooked up the portable oxygen and off we went.
We arrived to Julie at her hair place...and she was so excited to have her head really scrubbed. I helped her move from the shampoo chair back to the wheelchair and then Julie just did her hair while she sat in that chair. I ran to BelAir to get a few things and hurried back. She was done within about 45 minutes and it was off to get her toes done......She said that is felt so good to get her toes and hair done but she was really tired. I could see that she wasn't completely "aware" of the whole situation - she would cross her feet while they were still wet and turn her feet under forgetting that she had just had them done. My mom treated me to a pedi too...nice
It was now about 12:30 and she had not slept yet or eaten very much. I knew I had to make something quick and easy as she was fading fast....so she had an Ensure, cheese and bread and was off to bed.
I made the different appointments (doctor) that still needed to occur and wrote the "directions" of taking care of my mom.....tonight was her "widows club" in her complex - they meet every Monday just to sit and chat- Shirley thought it might be good to see if my mom would want to sit outside with them...it could be interesting. I left about 3pm and Carol came to sit with my mom.
Shirley called me later and said that my mom had stayed with them the whole time, about 1.5 hours, and had been cracking jokes and just hanging out. Good. I talked to my mom later and asked her if she had fun and she said it was nice...I told her "like old times" and she said Yes.
I got my mom up so that she could get her pills, a little coffee and a bite to eat before Kathy (PT) would be there. I had called a told the hair people that we would be a little late - they said no problem. I wanted to try and get a shower for my mom....but right now things don't move quite that fast...we started the water but Kathy arrived before that could happen.
Kathy talked with my mom about all that has happened to her in the last 7 weeks. My explained the best she could looking to me to fill in a few blanks. Then Kathy wanted to see her move...so my mom got up and walked with her walker and had to show her how she got in bed....once back in bed she showed her how to do some strengthening exercises that she wants her to do 2x a day as well as walking around the house.. Kathy set her next appointment for Wednesday and left. I hurried my mom into the shower and helped her where she needed it. She did good and I know it felt good to get a good shower in her own shower. OK we had to get going so I got her in the wheelchair, hooked up the portable oxygen and off we went.
We arrived to Julie at her hair place...and she was so excited to have her head really scrubbed. I helped her move from the shampoo chair back to the wheelchair and then Julie just did her hair while she sat in that chair. I ran to BelAir to get a few things and hurried back. She was done within about 45 minutes and it was off to get her toes done......She said that is felt so good to get her toes and hair done but she was really tired. I could see that she wasn't completely "aware" of the whole situation - she would cross her feet while they were still wet and turn her feet under forgetting that she had just had them done. My mom treated me to a pedi too...nice
It was now about 12:30 and she had not slept yet or eaten very much. I knew I had to make something quick and easy as she was fading fast....so she had an Ensure, cheese and bread and was off to bed.
I made the different appointments (doctor) that still needed to occur and wrote the "directions" of taking care of my mom.....tonight was her "widows club" in her complex - they meet every Monday just to sit and chat- Shirley thought it might be good to see if my mom would want to sit outside with them...it could be interesting. I left about 3pm and Carol came to sit with my mom.
Shirley called me later and said that my mom had stayed with them the whole time, about 1.5 hours, and had been cracking jokes and just hanging out. Good. I talked to my mom later and asked her if she had fun and she said it was nice...I told her "like old times" and she said Yes.
Sunday, May 6, 2012
Day 52
Sunday.....last night was not as smooth as Friday night.....I changed the mask back to the canula about 11:30pm and she slept a little...she woke up about 2:30 am and after helping her back to bed (she got herself turned around and couldn't figure out how to readjust herself) I put the mask on her again....it wasn't on right so it was making a lot of whistling noise and my mom was frustrated...so I took it off again and she went back to sleep...I didn't though. I laid there thinking about the "what if's"...what if being at home doesn't work?? what if she would need 24 hour care for longer than 3-4 weeks?? she has already brought up her finances...and how much this all was going to cost...I told her that I had it worked out..she doesn't like that...I thought about how she would feel having to give up control of "her stuff". Oh well we will just have to wait and see - in the meantime....here we go.
My kids woke me at 7:30 so I was up and running....my mom wanted to sleep longer....she asked the time and went back to sleep. She did think that is was Monday and that we were going to get her hair done. About 9 my mom got up...ate a little bfast and took her meds. The phone rang and it was Virginia the home health nurse wanting to come by and see my mom this morning...YES I said...so she said she would be there about 11am...my mom said "I am tired I want to go to bed" - I didn't let her so that she could be up for the nurse. When the nurse got there she asked my mom a few questions..and my mom took a little while to answer but she got them right. I asked Virginia (in front of my mom) if she could be left alone...and Virginia said not for a while....at least 3-4 weeks - my mom had been complaining about all the people in her house. We shall see. It would be hard to have all your independence taken.
My cousin Alina has been awesome these last 2 days...she came over and took Mia to her house or the park.....she would have been so bored just hanging around. Leif, Sonia, and Shirley worked hard with me to make a schedule to keep my mom covered....thanks you all. At 3pm today my brother came over so I could get going home....Michael has a test everyday next week and he needs to go to bed early and sleep well. It is easier for me to help my mom while my kids are in school as this keeps their lives consistant. So I will be there tomorrow and am taking my mom to get her hair done and her toes polished...she should be good and tired after that.
So until tomorrow...good night.
My kids woke me at 7:30 so I was up and running....my mom wanted to sleep longer....she asked the time and went back to sleep. She did think that is was Monday and that we were going to get her hair done. About 9 my mom got up...ate a little bfast and took her meds. The phone rang and it was Virginia the home health nurse wanting to come by and see my mom this morning...YES I said...so she said she would be there about 11am...my mom said "I am tired I want to go to bed" - I didn't let her so that she could be up for the nurse. When the nurse got there she asked my mom a few questions..and my mom took a little while to answer but she got them right. I asked Virginia (in front of my mom) if she could be left alone...and Virginia said not for a while....at least 3-4 weeks - my mom had been complaining about all the people in her house. We shall see. It would be hard to have all your independence taken.
My cousin Alina has been awesome these last 2 days...she came over and took Mia to her house or the park.....she would have been so bored just hanging around. Leif, Sonia, and Shirley worked hard with me to make a schedule to keep my mom covered....thanks you all. At 3pm today my brother came over so I could get going home....Michael has a test everyday next week and he needs to go to bed early and sleep well. It is easier for me to help my mom while my kids are in school as this keeps their lives consistant. So I will be there tomorrow and am taking my mom to get her hair done and her toes polished...she should be good and tired after that.
So until tomorrow...good night.
Saturday, May 5, 2012
Day 51
My mom slept ok last night....I woke up to check on her a few times...but slept ok. My kids woke me at 6:30 and my mom got up about 8:30....I think she is just used to sleeping that late...even though she may be awake and still waits until 8:30-9. Breakfast and pills and within about an hour she was already talking about a nap....Leif, Sonia and Shirley were coming over to talk about the next 2 weeks and schedule our helpers. My mom wanted to know what we would be talking about and when she went to bed about 10:30 I asked if she wanted to get up and be in the meeting she said "no". We did wake her at the end and she came out and sat and talked a little.
She still seems a little "detached" even though she participates in some of the conversation it just isn't her. It is strange to watch. She will ask for clarity when she finds herself confused. She gets really snippy with the kids and short with me. I mentioned to her today about our situation...she asked me what we were going to be talking about at our meeting and I told her that we had to organize help for the next couple of weeks. We talked about maybe looking at assisted living. I think that we will know in a couple of weeks if this is going to work. She still gets gets confused about the day whenever she sleeps and it takes a bit of convincing about the real date and what was going to happen that day.
Tonight she went to bed about 7:30pm...I tried to make her stay up but no go....so I helped her get ready (she does most of it I am just there to remind her). I put the mask on her about 8 so we shall see how long it lasts. I am realizing that I am not going to see the others who will be coming to help with my mom....so I have started lists to help....I am taking Monday off but would like to go back asap.
At this point I feel hopeful that this will work out for my mom....but also knowing that I have to stay ready to make decisions that may not be popular. For now we are trying to adjust to home. Monday she has a hair appointment and pedicure appointment and maybe a trip to the grocery store.
Take care all.
She still seems a little "detached" even though she participates in some of the conversation it just isn't her. It is strange to watch. She will ask for clarity when she finds herself confused. She gets really snippy with the kids and short with me. I mentioned to her today about our situation...she asked me what we were going to be talking about at our meeting and I told her that we had to organize help for the next couple of weeks. We talked about maybe looking at assisted living. I think that we will know in a couple of weeks if this is going to work. She still gets gets confused about the day whenever she sleeps and it takes a bit of convincing about the real date and what was going to happen that day.
Tonight she went to bed about 7:30pm...I tried to make her stay up but no go....so I helped her get ready (she does most of it I am just there to remind her). I put the mask on her about 8 so we shall see how long it lasts. I am realizing that I am not going to see the others who will be coming to help with my mom....so I have started lists to help....I am taking Monday off but would like to go back asap.
At this point I feel hopeful that this will work out for my mom....but also knowing that I have to stay ready to make decisions that may not be popular. For now we are trying to adjust to home. Monday she has a hair appointment and pedicure appointment and maybe a trip to the grocery store.
Take care all.
Day 50
Time for a homecoming....got everyone ready and the car packed. New I had 3 things to do on the way to Elk Grove......thought I could do them all in EG. When I arrived on Laguna Blvd. I realized that I had forgotten one thing...........the frickin medicine at the pharmacy by my house....OH shit!!! Had to turn around and go and get it all. I knew that my mom was going to be wondering where I was as I had told her 11am so I called Windsor and told them what was happening and to tell her I wouldn't be there.
Erika was at moms house when we arrived, she was going to watch my kids while I fetched Lis. Shirley let her car (since it would be easier to get into then my van). I arrived at Windsor about 12 with See's candy in hand to say thank you to the staff. The speech therapist had run off a bunch of papers so my mom could practice her cognition. My mom was sleeping on her bed and asked where I had been - she had been ready and waiting since 9am. After everyone came to give us papers and say good bye we were off.
We started home, it was kind of quiet in the car I think the nerves were setting in on both of us. My mom had said that she was anxious about going home. We wheeled my mom in the wheelchair and she sat right down on her stool. Michael got her some ice water and she just hung out. Shirley popped in and my mom was excited to see her and Ann and Ray came by too. My mom was fading and wanted to lay down so she did about 3pm...I told her that she would get about 1.5 hours to sleep so she could sleep at night. I made dinner and we woke her about 4:50 although she didn't want to get up. She ate pretty good, I would say close to her average before she got sick...she was always a small eater. Soia arrived about 5'ish, ate a little dinner and sat and talked with us.
She took all her pills and was off to bed about 7:45 she brushed her teeth and I helped her get into bed...she wanted to read a little befor the mask got on so I waited until I saw her fade and then I put it on...I decided to try the nose only mask because she wasn't wearing the other one at all and I figured that if she wore it longer then that was better than nothing. She kept it on, mostly, until 11:30 (she had taken it off a few times and I put it back....then I finally just put the oxygen back on and went to sleep...I checked her a couple of times and she still had it in...I found myself listening for her breathing....like having a newborn again. It is now 7:15am and she is still slepping although she has been up to use the restroom.
My mom is a bit confused and unsure of things....if there is chatter she wants to know what it is about. I had told her that she will not be able to be alone for awhile...I am interested to see what happens...she seems off but then it clicks...she seems unaware of the going ons around her but we shall see if that changes. I was really thinking that she was going to need to go into an assisted living place,,,,only time will tell.
Erika was at moms house when we arrived, she was going to watch my kids while I fetched Lis. Shirley let her car (since it would be easier to get into then my van). I arrived at Windsor about 12 with See's candy in hand to say thank you to the staff. The speech therapist had run off a bunch of papers so my mom could practice her cognition. My mom was sleeping on her bed and asked where I had been - she had been ready and waiting since 9am. After everyone came to give us papers and say good bye we were off.
We started home, it was kind of quiet in the car I think the nerves were setting in on both of us. My mom had said that she was anxious about going home. We wheeled my mom in the wheelchair and she sat right down on her stool. Michael got her some ice water and she just hung out. Shirley popped in and my mom was excited to see her and Ann and Ray came by too. My mom was fading and wanted to lay down so she did about 3pm...I told her that she would get about 1.5 hours to sleep so she could sleep at night. I made dinner and we woke her about 4:50 although she didn't want to get up. She ate pretty good, I would say close to her average before she got sick...she was always a small eater. Soia arrived about 5'ish, ate a little dinner and sat and talked with us.
She took all her pills and was off to bed about 7:45 she brushed her teeth and I helped her get into bed...she wanted to read a little befor the mask got on so I waited until I saw her fade and then I put it on...I decided to try the nose only mask because she wasn't wearing the other one at all and I figured that if she wore it longer then that was better than nothing. She kept it on, mostly, until 11:30 (she had taken it off a few times and I put it back....then I finally just put the oxygen back on and went to sleep...I checked her a couple of times and she still had it in...I found myself listening for her breathing....like having a newborn again. It is now 7:15am and she is still slepping although she has been up to use the restroom.
My mom is a bit confused and unsure of things....if there is chatter she wants to know what it is about. I had told her that she will not be able to be alone for awhile...I am interested to see what happens...she seems off but then it clicks...she seems unaware of the going ons around her but we shall see if that changes. I was really thinking that she was going to need to go into an assisted living place,,,,only time will tell.
Thursday, May 3, 2012
Day 49
Today I met with the social service coordinator at Kaiser to discuss options in case my mom has a hard time being home. I needed to know what would happen if she couldn't be home alone. After yesterday at Windsor I really felt overwhelmed with the care they said my mom would need BUT I realized that they only know my mom there and that they haven't seen her at home, in her own stuff. I think that within a few weeks we will see a change in my mom and that time will tell what will happen next...at this point it is one day at a time.
I got to Windsor about 10 and my mom was working with Jen (speech and cognitive therapist) my mom lifted her head from her paper and said hi and then went back to her paper. The paper was a list of questions that my mom had to think about and answer like "what is the name of you dr.?" and "what do you do first when you wake up in the morning?" I noticed that her writing had changed again and she was having a hard time. That is probably why I have not seen her doing and crossword puzzles lately. Jen said that my mom has a hard time asking for things so she really wants my mom to talk to people and say what she needs.
There were a lot of student nurses there today and their instructor. One student nurse came in to give my mom her meds....she was so nervous that she was shaking....my mom touched her hand and told her not to be nervous....and then proceeded to "instruct" her own how to get someone to take their meds....it was funny. The student relaxed and thanked us for letting her help....my mom again told her that she had done a good job. It was cute. After Jen left she asked me to play a card game with my mom where she had to sequence the pictures....she did them fine.
About 11 I left to go to my moms house for the oxygen training.....Shirley and Marcelita were there too so we could have more than one set of ears hearing this. Seems easy enough...we shall see.
Now it is on to finding a right person to hang out with my mom during the day....right now she is not to be alone..I will be there this weekend with my kids....an adventure for sure at least the noise of the kids will insure that my mom won't be sleeping during the day...hey thats one way to keep her up
I will let you know how it all goes....wish me luck
I got to Windsor about 10 and my mom was working with Jen (speech and cognitive therapist) my mom lifted her head from her paper and said hi and then went back to her paper. The paper was a list of questions that my mom had to think about and answer like "what is the name of you dr.?" and "what do you do first when you wake up in the morning?" I noticed that her writing had changed again and she was having a hard time. That is probably why I have not seen her doing and crossword puzzles lately. Jen said that my mom has a hard time asking for things so she really wants my mom to talk to people and say what she needs.
There were a lot of student nurses there today and their instructor. One student nurse came in to give my mom her meds....she was so nervous that she was shaking....my mom touched her hand and told her not to be nervous....and then proceeded to "instruct" her own how to get someone to take their meds....it was funny. The student relaxed and thanked us for letting her help....my mom again told her that she had done a good job. It was cute. After Jen left she asked me to play a card game with my mom where she had to sequence the pictures....she did them fine.
About 11 I left to go to my moms house for the oxygen training.....Shirley and Marcelita were there too so we could have more than one set of ears hearing this. Seems easy enough...we shall see.
Now it is on to finding a right person to hang out with my mom during the day....right now she is not to be alone..I will be there this weekend with my kids....an adventure for sure at least the noise of the kids will insure that my mom won't be sleeping during the day...hey thats one way to keep her up
I will let you know how it all goes....wish me luck
Wednesday, May 2, 2012
Day 48
Today was a day of "care training" where I was taught how to move my mom around. The therapist met me in my mom's room and asked her permission to talk frankly about my mom...my mom said "sure". The therapist said that my mom is dealing with confusion and needs some cues to sequens whatever she is doing. That she would not be able to left alone at home as she isn't always safe, that she gets up and starts walking without her walker and when using the walker she tends to stay far away from it which could lead to a fall. Someone would have to sleep in the same room as her to make sure she would know where to go if she needed to use the restrom and that we would have to be right there while she showered - prompting her to get the job done and then helping her transition out of the shower and help her dress. I was mentally exhausted after this session and a bit scared. She seemed a bit "off" today...not as strong as usual. She has lost another 9 pounds which makes her weight loss a total of 49lbs. The main nurse called me today about that and said that they were upping her power shake because of it. I asked about the new medication they started that should increase her appetite...they said it doesn't take effect for about 3 weeks but that her appetite would totally change. I sure hope so as I know that the weight loss and lack of eating are making her tired and weak...a bad combination when she has so much to do to get better.
We transferred my mom into my car...this turned out to be frustrating for my mom as she was confused by the instruction but she figured it out and got in and then out again. She thought she was going home right then but I reminded her that there were 2 more days left. Aleisha, the PT brought us back in and we went into the dining room where Ann and Ray were sitting (they had been there during the training). I asked to talk to Aleisha outside as I was feeling totally overwhelmed with the thought of all that my mom would need at home. How was this going to go? I can't be there 24/7 and I know that she doesn't want anyone there 24/7 but right now it doesn't seem that we have a choice. I need a bit of normalcy for my kids (and me for that matter) so I knew that I would have to hire some help as well as our friends help....it takes a village to care for Lis.
I think about all that has to occur before she comes home....groceries, meals made (I am not a cook), showers, appointments about long-term solutions and trying to get all things she needs. Learning how to use the oxygen tanks...finding places for myself and 3 kids to sleep at her house....packing for the 4 of us. Making sure my mom understands the importance of her own safety....talking to the med-alert people to get "the button" for her. Interviewing help, developing a plan, a schedule, a staff flow-chart....man....there is a lot. In the blink of an eye many lives have been changed forever...I am tired.
But as always the stuff will get done, we will find the right people, the village will be assembled. I am off for the next 2 days...to mobilize the troops and get the stuff in order. I will keep you posted. Good night all
We transferred my mom into my car...this turned out to be frustrating for my mom as she was confused by the instruction but she figured it out and got in and then out again. She thought she was going home right then but I reminded her that there were 2 more days left. Aleisha, the PT brought us back in and we went into the dining room where Ann and Ray were sitting (they had been there during the training). I asked to talk to Aleisha outside as I was feeling totally overwhelmed with the thought of all that my mom would need at home. How was this going to go? I can't be there 24/7 and I know that she doesn't want anyone there 24/7 but right now it doesn't seem that we have a choice. I need a bit of normalcy for my kids (and me for that matter) so I knew that I would have to hire some help as well as our friends help....it takes a village to care for Lis.
I think about all that has to occur before she comes home....groceries, meals made (I am not a cook), showers, appointments about long-term solutions and trying to get all things she needs. Learning how to use the oxygen tanks...finding places for myself and 3 kids to sleep at her house....packing for the 4 of us. Making sure my mom understands the importance of her own safety....talking to the med-alert people to get "the button" for her. Interviewing help, developing a plan, a schedule, a staff flow-chart....man....there is a lot. In the blink of an eye many lives have been changed forever...I am tired.
But as always the stuff will get done, we will find the right people, the village will be assembled. I am off for the next 2 days...to mobilize the troops and get the stuff in order. I will keep you posted. Good night all
Day 47 part 2
I had spoken with the nurse in the morning and she said my mom was the same....not wanting to wear the mask but eating a bit better. I arrived about 1:30pm and Jen (speech therapist) stopped me to tell me that she had taken my mom into the dining room for lunch...not that my mom was thrilled about it. My mom ate her lunch for a little while and then when she was done got a bit agitated and frustrated because she felt as though everyone had left her....I told Jen that this happened another day as well. Jen told my mom that if she ever feels like that then she has to talk to a staff person and ask for help...and tell someone what she needs - to go back to her room.
When I saw my mom the first thing she said was "everyone left me". Then she told me that she was going to be going home on Friday...really?? I left the room to find Josephil....she confirmed what my mom said that her discharged day would be Friday. Oh man...I knew it was coming...but is my mom ready? I go up and down...one day I think that this is going to work fine...then the next day I am thinking oh shit...this isn't going to work. We will only know when we try. My mom deserves a chance to try. She is just going to need a lot of help in the beginning for sure. Our insurance system is so jacked up...Josephil told me that she thinks my mom would do well in a care home or assisted living type place...but who can afford those places...they average $3500 a month. So why are they releasing her? So for now I will be trying to piece together her care between a lot of different people and am looking for a care/companion at home. I have spoken to someone already....and will have her come over this weekend to meet my mom and see what it is all about. I know that this is not a job I can do right now.....I have 3 young kids (who need a halfway normal life-I really want to try and keep, at least, their afternoon and evenings "normal") and I am almost done with my school year, it ends June 1 and I just want to finish that out. I also believe that it would not be a good situation for me to be her "care person" and having someone who has done this before will be the best. Again we shall see. My mom admitted that she is nervous about going home...
Until later...have a good Wednesday
Tuesday, May 1, 2012
Day 47 part 1
Good Morning....I promise to write the blog as soon as I can....I am going to bed.
OK day for Lis today. More details tomorrow.
OK day for Lis today. More details tomorrow.
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