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Hey there! I just stumbled upon this forum today and it is a God send. I am completely overwhelmed and feel like crying most of the time. I don't want to just unload on y'all so I will try to hit the main issues. |
A brief background: My husband was deployed to Iraq in April of this year. At that time my father was juggling between caring for my grandfather (diagnosed with PD 10 yrs ago although probably had much monger), running the family business, and trying to maintain a normal life (haha). Oh, and there is the fact that my mother had a heart attack last Christmas Day and although she has recovered nicely and is doing quite well, my father maintains his role as provider and protector of the family and stresses constantly over her. When my husband deployed, I made the decision to move in with my grandfather and let my father move back to his house instead of having to juggle both. He was staying at his house in the evenings and then going to my grandfather's for the night. All was well until this July when my grandfather fell and broke his hip (he broke the other hip about 5 yrs ago) and needed 24 care. It was difficult for my father to run the business (air conditioning business...Texas...summer) and be with my grandfather all the time so it just made sense for me to become his caregiver. He recovered from his hip replacement quite well and wasn't experiencing any PD problems.
Most of the time it is just my grandfather and myself, my 11 yr old daughter stays with my parents during the week because her school is just blocks from there home, and it is sometimes impossible for me to leave even long enough to take her to school. Before this last hip surgery he was going to church every week and even going to a friends house a few evenings week. Although he used a walker and wheelchair, he was at least somewhat mobile. Now he is bound to the lift chair in the living room. He goes from his bed to his Rascal scooter, I have to work the control because his hands shake so bad and he has had a few wrecks while trying to drive it himself. He goes into the living room and I help him into the chair, where he sits all day. I have to help him stand to urinate, or help him in the bathroom. I sometimes feel like maybe I have let things get to this stage by helping him too much? At this point he calls me to say he has to urinate, I help him stand, hold the urinal, and then help him back into the chair. He was able to do it all by himself this summer, even after the hip surgery. I don't know if I should have forced him to do more by himself, but he would just sit there and not do it unless I helped him.
In addition to being basically bedridden (or chairridden I guess) he has terrible night terrors. I should say he has them WHEN he sleeps. he goes for days without sleeping, then becomes angry and dilusional, refusing to eat or sleep at all. Now he hardly talks. Let me point out that he has never been a big talker anyway. He is German and moved to Texarkana in 1950, a time when it wasn't cool to be European, least of all German. He spoke only when he had to I guess. So now he hardly talks, and often in German. Sometimes a little of both in the same sentence. And when I don't understand him he gets agitated.
What else? Um, the doctors prescribed Seroquel to help him sleep and it made things worse. As did Lunesta. So he goes for days without sleeping, barely talks, sees things that are not there, doesn't know where he is most of them time, and usually doesn't recognize me. I spend most of the day crying, or napping when he does. He is most active at night, naturally when there is no medical help available. And the best part is that when we take him to the doctor he shows no signs of any of this. He is lucid and aware! It makes me feel like the doctors don't believe us when we tell them how he is at night!
I know this post was long and jumped around a lot. I don't know where to turn at times, and there is so much going on with him right now that I could write a book! I know everyone here is dealing with the same issues, and I hope to gain some insight and learn from you. I just needed to vent a little. I grew up spending all my free time with my father's parents. My grandmother died when I was 17 after years of battling kidney disease, and I just pushed all those memories of my childhood to the back of my mind I suppose. Now I am living in the house that was such a happy place for me growing up, but now it is like a jail cell. I feel trapped, and guilty because I am not doing enough to make my grandfather better. I can't stop crying, I miss my husband and my daughter, I feel useless most of the time. Any advice y'all can offer will be greatly appreciated. I am looking forward to meeting everyone and sharing with you.
Thanks for reading, sorry for the lengthy post...
Welcome - it sounds as if you found us just in time! You do have a great deal on your plate and I am sure the worry about your husband is constant. |
It is difficult to make any judgements about your GF condition without more information. Just reading your post makes me wonder if he is not in advanced PD with dementia. Tell us about his medications and is he being seen by a good neurologist?
To answer some of your questions:
I don't think he would be physically capable of urinating without assistance. This is a task you help him with and the role reversal is hard. I am sure you looked up to your GF and the thought of him being like this is very frightening. I don't think your assistance has contributed to his decline - it is more likely progression of his PD.
The fact that he recovered from his recent hip surgery does not address the psychological problems of disorientation that often accompanies surgery in an elderly person. This can take several months to resolve and in some cases it never does.
The sleeping problems and night terrors pretty much go with this disease and I doubt that it will change. If you notice it being worse in the evening and night it is probably "sundowning" and again part of the disease.
It would be my guess that the poor communication is again due to his disease. Sometimes it helps to engage them in conversation about the past. Try photo albums.
PD dementia pts often can "pull it together" for short periods of time. I never understood how but they do. Physicians understand this but rarely acknowlege it unless it is brought to their attention. I have always encouraged caregivers to write a note to the physician outlining the issues (the ones you have listed here are valid). Keep it short and unemotional. Just list the problems 1,2,3... If it is longer than one page it will not be read. Give the note to the nurse when she puts your GF in the exam room and tell her that the doc needs to read it before he comes in. It always worked for me. If your GF asks tell him it is something for his medical records - it is.
You have some very interesting family dynamics! Just who decided that you had to do all of the caregiving? It is commendable that you stepped up to the plate but there is no way you can do it all yourself. That is a major thinking error and you will quickly fall apart without some help. Even in Texas air conditioning isn't a big business in January. I would suggest it is time for a family conference. Discuss:
Perhaps your father and mother can take some of the night shifts. If not, they need to get a paid caregiver in part of the time.
How does your daughter feel about all of this? I think she needs you some of the time, especially with her father gone. Grandparents are great but they can't take your place.
Who has Power of Attorney (POA) for your GF and who makes the medical decisions?
Perhaps it is time to discuss a nursing home placement for your GF?
Read as much as you can find about PD and PD dementia. Knowledge is power. It may also help you understand why your GF is acting the way he is. It is the disease, not him.
Read the other recent posts on this forum. You will find that there are others in similiar situations. It helps to know you are not alone. No post is too short or too long. Ramble as much as you like - it is therapuetic.
Stay with us and we will help. I hope that 2009 improves your current situation.
Thanks for your prompt reply! I just feel overwhelmed sometimes. As far as the family goes, I didn't intend for it to sound like I was the only caregiver but rather the primary. My father is still very much involved, just not living here. He handles business end of it all (paperwork, insurance, etc.) and also sits with my grandfather while I take the occasional break. He did this for several years and it just wore him down, that is why I wanted to try and help. He did the same thing when my grandmother was ill, taking her to dialysis 3 times a week, helping my grandfather with as much as possible. He does have a brother that lives here, but my uncle is not as helpful as he could be. He is single and could very easily take up some of the slack with my grandfather but the best we get out of him is a little help in the mornings. The ironic part is that he is the only one that my grandfather chooses to listen to. There have been a few times in the middle of the night when my father and I can't get anywhere with my grandfather that I call my uncle and he has to come over and help. He never sticks around any longer than he has to, but I am grateful for the help we get from him.|
I guess having the night shift to myself is the most overwhelming. I feel helpless most of the time. I have to sleep when I can during the day, and that takes away from any normal life I have, or had. The last 2 weeks my daughter was here for the holidays and I felt so bad when I dozed off during the day instead of playing with her. I know she understands and she always tells me that it is okay, but it still bothers me. Tonight when my Dad came to pick her up I started bawling. Of course I didn't let anyone see me, but I couldn't help it. I don't know if it was because she was leaving or because I was here alone again, if that makes sense. As far as the rest of the time she stays with me all weekend or any time school is out. I try to keep things as normal as possible when she is around, but you are right...with her Daddy gone I have to be both parents. That is really hard, especially during the holidays. My husband will be home for 4 weeks in April and then he leaves for another year. When he comes home my father will assume my duties as much as possible to allow me to spend as much time as possible with my husband and daughter.
I know I am not alone, and I try to interact with my grandfather as much as possible. But I do feel like I am all alone sometimes. Now I am sitting here on the computer while me grandfather is in the other room. I kow I am in for another long night. I feel guilty about feeling burdoned, if that is the right word. I would do anything for anyone in my family, and I hate it when I get irritated. I just don't know where to turn or what to do some days, and the holidays were really rough this year. Being away from my husband was bad enough, and then everything else just piled up. I am normally a very easy going, rational person so I hope this is just too much at once and it will get better. If not I guess there is always therapy!
Now to answer your questions:
My GF does have a neurologist, but I do not think he specializes in PD. In fact, there isn't a specialist in Texarkana that we have been able to find. As far as medications, he has not been able to tolerate any PD meds except levo carbidopa. He was taking several other meds that were inteacting with each other and we finally fine tuned them and eliminated all the extras so now he takes carbidopa, 2 meds for urinary problems, blood pressure pill, and a few supplements. He was taking compazine, phengran, lexapro, thyroid med, and a host of others that the doctor hadn't adjusted in years until my Dad started going to the doctor with my GF. It has been a learning experience, probably lots of wrong moves. We just try to take each day as it comes, and feel blessed to be given another one.
My daughter is doing a geneology project for school and has chosen her German ancestry to research. I have tried talking to my grandfather about his family but sometimes I think bringing up those memories bothers him. He has a younger brother that has helped fill in most of the missing pieces for us, and he told me a little about how things were for my grandfather during the war and when he first came to the United States. My Dad also said that he has always had night terrors, so that may be normal.
I try to keep him active as much as possible during the day in hopes that he will be able to sleep a little at night. Nothing helps so far, and the 2 meds the doctors prescribed to sleep madee things worse. Then of course no sleep just snowballs into more dementia, etc.
As far as family participation, this is about it. My father site with my GF when I need to run errands, etc. My uncle shows up in the morning for about an hr. The past few days he has stayed here for a few hours each morning so I can sleep. I can't remember the last time I had a real night's sleep! Bet none of you can! <g>
My father has POA and like I said takes care of all the business end of things. The topic of a nursing facility has come up but we have all agreed to let that be an absolute last resort. As long as someone can physically handle things with my GF we want to do it here. Basically because we are afraid it would make things worse for him to be away from his home. The times he had to go to the rehab hospital after his hip surgeries (has broken both hips in the past 5 years) he was very disoriented and upset because he thought we had "put him in a home" as he put it. I know it may be necessary in the future, but I just don't want to put that on the table just yet.
I probably missed something, but please know that I am taking everything you said to heart. I need advice from those of you that have been where I am, and can tell me what I can expect. Thank you again for your post and I look forward to hearing from you again soon!
Hi again, Katie|
Thanks for the additional info. You seem to be grounded in your expectations for your GF and in the fact that he has an incurable, progressive disease. PD is just terrible for everyone in a family.
Unfortunately your exhaustion and fears are very common. I wish that I had some recommendations for you in that regard but I never figured it out myself. I would also tell you that anger and guilt are common and OK. We all feel that way. You are angry about having so many issues in your life - you would not be normal if you weren't. The guilt is grounded in your obvious nurturing personality where you feel as if you should make everything better for everyone. In your GF's case all that you can do is keep him as safe as possible. He will fall and he will get worse regardless of what you, or anyone else, does. It is part of the disease.
If your GF is unable to ambulate what symptoms concern you the most during the night? Perhaps we can help you with that.
You do need to take care of yourself as much as possible. Your GF has had a full life but you have a daughter and husband that need you to be there for them in the future.
|Katie, has your family looked at getting a home health aide to take some of the burden off you? Having someone come in and help might postpone the day when your grandfather would need to go to a nursing home. Also, I've found that our county office on the elderly provides free social worker service which was extremely helpful in finding what services were available for my father and how to access them.|
there are several good movement disorder specialists in the Dallas area. Presby in Plano and UT Southwestern in Dallas. I know it would be a two day trip but I believe it would be worth it.