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By lynn On 2009.08.24 20:41
Dear friends, I'm tired. My husband started adult day services 2 weeks ago. He goes twice a week and so far I have been called 4 of the 5 days that he has been. Nothing major just stuff. I thought this would give me some respite but it hasn't. The center is exceptional and the care wonderful. I think i need to add another day which I plan to do in a few weeks. My husband has taken a dive in the last few weeks. He's falling frequently and the addition of 2 sinemet tabs per day has not helped much. He's in his 16 year so I feel we have been on borrowed time. he now complains of something new everyday and I'm just in need of a break but I don't know if that's possible. Calls are into the doctor for 2 weeks and I haven't heard from him which does not please me. It makes me feel like throwing in the towel. I really don't think he can do much anyway. I've ordered the ustep and wish it would arrive. Anyway, I'm just fed up with the whole mess. I haven't been short with my husband and hope I can keep my cool. In the past, we would have a few days of problems and then we would have a break. The break isn't coming now and maybe this is just PD progressing. Who knows. I plan to visit a nursing home next week to get information. I know I can't continue like this for long. I don't have home health in yet and based on my experience with them in the past, I don't think they are much help. I just end up telling them what to do over and over.Maybe tomorrow will be better.

By annwood On 2009.08.24 22:30
Of course you are tired - you are human. I remember feeling that I had to have a break if even for 10 minutes and the thought of how much longer can I go on with this. You want to throw in the towel but there is nowhere to throw it. Do you have any help from family? Sounds as if you are in desperate need of a break. Can you put your husband in the day service, go home and just not answer the telephone?

By atir On 2009.08.24 23:15
i certainly can sympathize with you.
I felt the same way this past week. My husband has had the disease for about 20 years. Every week something new comes up. He looses his balance and falls a lot and I feel like I can't leave him for 10 minutes. However, even when I am here things happen. He wants to still do things he use to do, but is now incapable of doing. I actually get angry and frustrated with him. He doesn't seem to understand what I am trying to tell him. One day this week he had a terrible time walking. It was all I could do to get him to the bathroom. I had to run out to the store later and I wasn't gone long at all. When I got home he was upstairs, moving furniture around.
I could have walked out that day, I was so upset. Like you, I am very tired of it all.

By Emma On 2009.08.25 04:23
Lynn, I feel your pain. It is so hard to find the strength to go on sometimes. Then just when you think you can't do it anymore things suddenly get better for a while. Since my last post my husband has decided not to divorce me and, in fact, has been exceptionally nice. I know that won't last but it's great for now. Maybe he's being nicer because he's distracted by his latest project. He now has a theory that Parkinson's patients fall because of changes in the earths gravitational pull. He's doing "research" which involves hanging plumb lines all around the house. Yesterday we went out for coffee and when he got in the car he thought his suspenders were the seatbelt and got frustrated because he couldn't find the hook thing to fasten them. It never ends does it?

I can't believe your doctor isn't returning your calls. Maybe you need a new doctor.
In the meantime, we're here for you. Em

By annwood On 2009.08.25 11:05
Emma - I had to chuckle at your post. A sense of humor is essential if you are to survive all of this!! The crazy ideas are always interesting and this one is for the books. I always found the danger in being around it so much that my husband's ideas would start to sound normal. Sort of like Alice in Wonderland. Glad things are going better right now.

By Mary On 2009.08.25 16:33
Lynn, I feel your pain. I wrote a post entitled "I'm so tired..." a few weeks ago or so myself. I feel tired pretty much 24/7. Caring for my father has been consuming. I struggle and fail daily at keeping balance in my life. I am currently looking for a nursing home for Dad as I have reached my physical limit to care for him and soon, I fear, medically he will need more care. You'd think I'd find relief in that but the idea of Dad going into a nursing home sets me crying everytime. Go figure! Hugs and blessings to you, Mary

By lynn On 2009.08.25 21:52
Thank you all so much. You understand. My husband has taken some nasty falls this week. The ustep walker is due any day. I wish the doctor would call back. he's good though and worth the wait. The problem is that his nurse is out sick and I think the staff can't make up the void. Is there anything they can do to prevent the falls? We increased his sinemet by 200 mg last week. I fear any more will just make him sleepier and more confused. So I guess I'm preparing myself that we are probably approaching the point when there are no medical fixes.

By annwood On 2009.08.25 23:02
Hopefully the U-Step will help. You may eventually have to rely totally on a wheelchair to prevent the falls. To my knowledge there is nothing medically that will stop the falls.

We spend so much time trying to make things better that when there is nothing to be done it is frightening and very sad.

By WitsEnd On 2009.08.26 09:50
Unfortunately the frequent falls seemed to start, at least for my dad, as he was entering the final months. There's really no way to stop them when dementia is there without restraints. Even in a wheelchair they will try to stand up and fall. If you can sit them in a recliner with their feet up that they can't let down and they can't climb over the arms--that's probably the next best you can do. It's just really hard to see them keep hurting themselves and telling them to stay seated with the dementia just doesn't work.

I went to a stress class they hosted at work yesterday and one of the big things they said was the importance of humor. I had one of those ah ha moments. You may not can take time to go exercise or go to a spa or do something major....but you can take a few minutes to read something funny and laugh. They said it releases endorphines and makes you feel better.

Keeping a sense of humor through everything isn't easy. They said the average person laughed 15 to 20 times a day. I don't think I'm average now--and I sure wasn't during all the problems with dad....but if listening to a Jeff Foxworthy cd for a few minutes will make you feel better though--why not give it a try?

By lynn On 2009.08.26 14:49
Witsend- You are so right about humor. My husband still makes me laugh. When I dropped him off at adult day services, I said I wonder how long you'll be here today before they call me. when I kissed him goodbye, he said I'll behave today so they don't call you. we laughed.


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