Another week of doctor visits and therapy. We saw the Movement Disorders specialist this week. He agreed with the previous neurologist that Grandma has PSP. With this visit came the realization, to her, that this is not a better diagnosis that PD. Up until this point she seemed to think that PD was about as bad as it could get. Unfortunately, PSP progresses faster and doesn't have medications that help. So, the doctor took her off of the Parkinson's meds she was put on last month and is putting her on an anti depressant. I was really happy about both of these things. I really think she needs the anti depressant, but didn't want to bring it up.
On the way home from the doctors, she and I had a serious conversation about what she wants for the future. After our talk with the Dr. it became clear that if we don't discuss these things soon, she won't be able to. Eventually this disease will take from her the ability to control all her basic functions. We have decided that she will continue to live with us as long as I can care for her. She understands(as best she can) that eventually her needs will surpass my abilities. At this point she has asked me to find an appropriate nursing home, close to our home, for her. This was a horrible conversation to have. She is petrified of what is going to happen to her. I can't imagine what that would be like.
For now, we are continuing with life "as usual". She is going to continue PT/OT as long as her insurance will cover it. Although she may never see an actual improvement, it may help slow the progression down a little. Even a little bit is better than nothing. In a few weeks, once the shock of this news is a little less fresh, I will start looking into nursing homes. I want to be prepared when the time comes that we need to make a change. I hope this is years down the road, but I don't want to wait to find out.
I'm having an easier time dealing with the every day interactions. I definitely think taking the time to exercise is helping. I haven't quite met my 5x/week goal yet. I find that reminding myself that she's not intentionally doing things to annoy me is helpful. I'm also adjusting to repeating the same information over and over.
We are discussing getting Grandma a pet. Probably an older small dog or cat. I think she would enjoy having something to dote on and care for as best she can. I have to keep in mind that whatever we choose, in the long run, I'll be caring for it. So, I'm thinking long and hard about whether I really want that added responsibility. At this point, if I honestly believe she'll enjoy it, I'll end up getting it for her. There are so few things she truly enjoys right now, I'd love to provide that for her.
Sunday, August 26, 2007
Monday, August 20, 2007
New diagnosis and other info
It's been a busy couple of weeks. I have had an appointment for Grandma nearly every day. She has started physical therapy, occupational therapy, has had blood work done, met with the geriatric specialist and the neurologist. Here's what I've learned. If it looks like Parkinson's and Alzheimer's, has all the symptoms of both, it still may not be either. Today's doc thinks she has PSP aka progressive supra nuclear palsy.Although very similar to the previously mentioned diseases, it doesn't respond to the same treatments. So, now we're seeing a "Movement Disorder" specialist at the Cleveland Clinic. This is quite a drive, so hopefully we won't have to go frequently.
I also learned that Gma's vision problems aren't from her actual eyes. This is kind of hard to explain, but her eyes see 20/20. However, because of neurological problems, she can't focus them to actually see clearly. Now in addition to her physical therapy exercises, we have to do eye coordination exercises. She will be seeing a neurological opthomologist in a few weeks.
Also, since the geriatric specialist took her off the extra blood pressure meds, she hasn't been falling. This is a huge relief, although I still have to really watch her. I'm very hopeful that in a few weeks we'll start seeing some improvement and she'll be able to engage in more activities.
On a personal level, I have committed to working out 5 days a week. I've found this is very helpful to my sanity. When I start to lose patience, I walk away. I really have to watch my tone. Although, Gma seems really out of it sometimes, she really picks up on my tones. She says she's happy being here, but it's really hard to tell.
I guess only time will tell
I also learned that Gma's vision problems aren't from her actual eyes. This is kind of hard to explain, but her eyes see 20/20. However, because of neurological problems, she can't focus them to actually see clearly. Now in addition to her physical therapy exercises, we have to do eye coordination exercises. She will be seeing a neurological opthomologist in a few weeks.
Also, since the geriatric specialist took her off the extra blood pressure meds, she hasn't been falling. This is a huge relief, although I still have to really watch her. I'm very hopeful that in a few weeks we'll start seeing some improvement and she'll be able to engage in more activities.
On a personal level, I have committed to working out 5 days a week. I've found this is very helpful to my sanity. When I start to lose patience, I walk away. I really have to watch my tone. Although, Gma seems really out of it sometimes, she really picks up on my tones. She says she's happy being here, but it's really hard to tell.
I guess only time will tell
Sunday, August 5, 2007
One week down
We passed the one week mark and we're all still functional. We've had mostly good days. Grandma has had a few falls, but nothing terrible. She drives me a little crazy sometimes, but I'm trying to work through it. I find it frustrating that she is frequently wrong about things and can't be convinced otherwise. Once she has an idea in her head, it's stuck. I'm really trying hard to just let these things go, if they aren't important. It's more challenging than I would have expected. I always knew I like to be right, but I didn't realize how much. :)
The nurse came for the first time on Friday. It was nice to be able to come and go as I wanted. No lugging the walker or worrying about Grandma falling. Grandma was confused as to why the nurse was here. I've told her many times, but that doesn't always help. The nurse was ok. I wasn't thrilled, but I think she will be fine for our needs. She talked Grandma's ear off, which was amusing.
My greatest annoyance today was her need to chat. Although I love to talk, even I need a break. She prattled on endlessly about whatever came to her head. This would be a little less annoying if it all made sense, but it doesn't. Interestingly, this was the same thing that made me crazy when dealing with my mom when she had a brain tumor. I don't know what it is about dementia that makes people so dang talkative. This is definitely something that I'm going to have to work on either dealing with, or tuning out.
The last two days, Grandma has had accidents. This is nasty. I'm not sure I'll ever adjust to that job. I try really hard not to make a big deal out if, because I know she already feels bad, but eeeewwww!!! Clorox wipes are my new favorite thing!! How sad!
The one tip I have this week is Vitamin Water!! Grandma doesn't drink enough and she will not drink plain water. However, she will drink any flavor of VW. I love it too, so we're buying it by the case now.(I don't give her anything with guarana) Even if she drinks a bottle a day, it's only $25 a month. Way less than UTI meds and less gross to deal with.
I learned how to put hearing aids in this week. It's very easy, which makes it a little nuts that she refused to wear them. Oh well. I put them in as soon as she's done in the shower. A little less yelling is a good thing.
The nurse came for the first time on Friday. It was nice to be able to come and go as I wanted. No lugging the walker or worrying about Grandma falling. Grandma was confused as to why the nurse was here. I've told her many times, but that doesn't always help. The nurse was ok. I wasn't thrilled, but I think she will be fine for our needs. She talked Grandma's ear off, which was amusing.
My greatest annoyance today was her need to chat. Although I love to talk, even I need a break. She prattled on endlessly about whatever came to her head. This would be a little less annoying if it all made sense, but it doesn't. Interestingly, this was the same thing that made me crazy when dealing with my mom when she had a brain tumor. I don't know what it is about dementia that makes people so dang talkative. This is definitely something that I'm going to have to work on either dealing with, or tuning out.
The last two days, Grandma has had accidents. This is nasty. I'm not sure I'll ever adjust to that job. I try really hard not to make a big deal out if, because I know she already feels bad, but eeeewwww!!! Clorox wipes are my new favorite thing!! How sad!
The one tip I have this week is Vitamin Water!! Grandma doesn't drink enough and she will not drink plain water. However, she will drink any flavor of VW. I love it too, so we're buying it by the case now.(I don't give her anything with guarana) Even if she drinks a bottle a day, it's only $25 a month. Way less than UTI meds and less gross to deal with.
I learned how to put hearing aids in this week. It's very easy, which makes it a little nuts that she refused to wear them. Oh well. I put them in as soon as she's done in the shower. A little less yelling is a good thing.
Wednesday, August 1, 2007
Today has been quite an eventful day with Grandma. To start, she fell in the bathroom today and pulled down the shower rod and curtains. She managed to damage the wall that is less than a week old. Then to top that off, she decided to come upstairs without using the stair lift. She says it wouldn't work, but she didn't have it turned the right way. SO, she CRAWLED up the stairs and proceeded to trip at the top while trying to get up. Thank God she didn't fall back down the stairs!! She doesn't appear to be any worse for the tumbles.
I gave her a good firm talking to. The really frustrating thing is that we have a buzzer that she can press to call me for assistance. Or she could have called up stairs. She chose not to do any of those things. I guess that's dementia. If it made sense, it wouldn't be so annoying.
She was mad at me today because I didn't take her to the bank. It doesn't sound like a big deal, but Grandma wants things done on her time schedule. Even if she has the wrong day, she still wants it done then!!
I had anticipated this being an adjustment, but I wasn't prepared for this. I feel completely incapable of dealing with her. My goal in moving her here was to provide a safe, stable environment surrounded by people that love her. I wanted to have her more engaged in what is going on, not just the game show network. I'm really hoping that having the nurse coming on Friday will help. Not just for the break, but also to have a professional to help me learn how to do this.
I hope to find some good resources online, and then I'll share them here. I'd love comments from others that have gone through, or are going through this situation.
I gave her a good firm talking to. The really frustrating thing is that we have a buzzer that she can press to call me for assistance. Or she could have called up stairs. She chose not to do any of those things. I guess that's dementia. If it made sense, it wouldn't be so annoying.
She was mad at me today because I didn't take her to the bank. It doesn't sound like a big deal, but Grandma wants things done on her time schedule. Even if she has the wrong day, she still wants it done then!!
I had anticipated this being an adjustment, but I wasn't prepared for this. I feel completely incapable of dealing with her. My goal in moving her here was to provide a safe, stable environment surrounded by people that love her. I wanted to have her more engaged in what is going on, not just the game show network. I'm really hoping that having the nurse coming on Friday will help. Not just for the break, but also to have a professional to help me learn how to do this.
I hope to find some good resources online, and then I'll share them here. I'd love comments from others that have gone through, or are going through this situation.
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