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By bluelake On 2009.07.12 09:14
Hi,

My dad (83) was diagnosed with PD a couple years ago. Most of the year, I live overseas (I teach in a university), so my two sisters, their husbands and children take care of our parents (our mom is the same age and has many medical concerns of her own) during that time; while I am staying at my folks' place, I act as main caretaker, although the other family members still do an awful lot, and I am very grateful for it.

It has been very difficult, in many ways, for all of us, as I'm sure everyone here can fully understand. Our dad was always the strong one with lots of imagination and energy. He still has quite an imagination and spirit, but the body and mind are having quite a hard time keeping up with them. He still has many things he wants to do, and sometimes acts as though his PD is a passing phase and not a chronic disease.

He had a small stroke (TIA) nearly a decade ago and that is what initially slowed him down. Aside from slightly slurred speech and a little problem with mobility, he was still getting around. However, there came a time when he just couldn't get out of bed or sit up on his own, and started showing other classic PD symptoms. His doctor diagnosed it, put him on sinemet and, after a dose increase, he perked up. He also has congestive heart failure, is on diuretics (among other meds), so incontinence has sometimes been a problem. Recently, he was having problems with constipation, a common PD problem, and his neurologist had us remove the nortryptylin (headaches) he was taking, as it is known to add to constipation, along with adding in Miralax in the morning; his problem decreased. Also, he had us change his diet a bit; no protein at breakfast or lunch (he said protein seems to interfere with sinemet), but give it to him at dinner, as the evening is a time for slowing down. His energy levels increased quite a bit (maybe a bit too much--I'll explain next).

I think one of our biggest challenges is that our dad still wants to do things on his own. He has a very bad balance problem, walks with a wheeled walker, and needs lots of help sitting down/getting up. He has given up driving (as has our mom), but here on their 30 acre property, they have an electric golf cart to get around here and there. My dad's workshop pole building is about 200 yards away, and one of my brother's in-law and I still use it for not only storage, but also doing some shop-type things. The problem is, our dad still wants to go down and look things over (on his own). In the past couple of days, he has even taken the family van to it. We have all tried to let him know as lovingly as possible that he should not use the van and should only use the golf cart. There are many other things in which we have had to keep him away from.

The problem being, he feels like a prisoner and has said as much. We try to explain to him that whatever he wants to do, someone has to be with him due to his balance problem. We tell him that we are very happy that he is still able to be in his own home, but if he has a fall and becomes completely incapacitated, Mom won't be able to care for him and he would have to go into some kind of care facility. Although he knows what we say is true, he is still resentful and will sulk for some time. I try to cheer him up by promising to do things with him together; the other day he said, "I know you mean well, but I feel like I'm in a cage."

My personal problem is, I am working on a doctorate right now and need to do a lot of dissertation research while I am on break here in the States. A lot of my research is, quite literally, field work. Whenever I go out, my dad will soon follow, to see what I'm doing; I cannot get anything accomplished, as I will encourage him to go back inside, and then will spend time with him (having a coffee together or something). I sometimes end up trying to sneak out, but if he doesn't see me for some time, he'll head outside to look for me. My sibs have offered to come once in awhile so that I can get some stuff done, but that can only be sporadic due to schedules. I don't want my sibs and their family members to have any more burden than necessary, as they help out without me for 10-1/2 months out of the year as it is.

I have many more things on my mind, but I've written so much already, so I'll close for now.

I love my dad (and mom, too!) and I love the time I am able to spend with him. Still, there are many other things that have to get done. Any thoughts or suggestions?

Thomas

By lostdaughter On 2009.07.12 12:58
Welcome Thomas!

You'll find wonderful, caring people here who can relate to your situation.

It's wonderful that you & your siblings can work together to take care of your parents. Based on my own situation & many others here, that's quite unusual. Caregiving often falls on one family member while the rest sit back, try to tell them what they should do & criticize. I'm sure it's hard for all of you but it's a blessing that you are working together.

I wish I had advice on what to do about your dad wanting to do things on his own. My mom refuses to use a walker & isn't supposed to be up walking around at all without someone with her. Her injuries from falls include a broken arm, staples in her head & stitches from her wrist to elbow. In spite of the fact that she falls 8 or 10 times a day she continues to get up every chance she gets. She sits & thinks of reasons to get up & walk & often can't tell us why she's up if she gets "caught". We've also had the conversation about the fact that she's going to hurt herself badly enough that she won't be able to stay at home. She understands but looks at us defiantly & sometimes says she isn't going to let that happen. She took the same attitude about driving, saying she wasn't going to have an accident, etc. Telling her that no one leaves home with the intention of that happening did no good. She agreed not to drive, then went behind my back & did it anyway. I wanted to trust her, hesitated to take her key away, but finally felt I had no choice. I have to work & she can't be reasoned with. I finally took the battery out of her car & parked it in a spot I hoped she couldn't get it out of. Trying to explain to her that we have other responsibilities to take care of & asking for cooperation have done no good with my mom. We can get her needs taken care & get her situated & happy then explain that she's to let us know if she needs anything. If we turn our back & she gets the chance, she's up.

I hope someone else will have some suggestions for you. I apologize for sounding so pessimistic. This problem has been ongoing with my mom for so long that it's worn me to a frazzle.

Best of luck to you.

By bandido1 On 2009.07.12 16:08
Thomas: I am a 77 year old patient with medical difficulties including PD and congestive heart failure. I believe I can identify with your father's problem. I have been pretty much shut in for about a year now. You state your father has a pretty active mind but his body is failing him. That is me also. The only advice I can offer is to keep his brain busy with whatever appeals to him. In my case, it is this forum as well as an active role in seeking a cure for PD through participation in other forums as well as PD support groups.

I might also suggest the use of Nintendo brain games available and Wal-Mart or Best Buy. I find them very useful in keeping my mind active as well as providing some relaxation.

Finally, I would suggest reading some of my threads under the username bandido1. They might offer some additional perspective on the patient view. Best of luck! Bob C

By bluelake On 2009.07.12 16:11
Thanks, Lostdaughter and Bob! I really appreciate the thoughts :)

Thomas

By bluelake On 2010.07.28 21:06
Well, it's been a year since I last posted on my father. Unfortunately, he's gone downhill quite a bit since that time.

At the beginning of April, both parents entered a nursing home, as they need help 24/7; For a few months, my sisters arranged for paid help to be with them day in and day out; however, that quickly whittled down what little nest egg they had and they are now supported by Medicaid in the nursing home.

After entering the facility, my dad declined greatly. He wasn't eating well before entering, but eats even less now. He is no longer with it and seems to live in his own dream world; he can't seem to come to grips with where he is and talks as though he's in his own house--he gets agitated when someone corrects him. Actually, he gets agitated about most anything now, which is quite disconcerting, as it is 180 degrees as to how he was pre-Parkinson's.

For a time, he was on the Exelon patch, which was supposed to replace the Aricept he was taking; however, it strongly affected his personality and he even knocked one of the attendants down (she was bruised and scraped). He was taken off the patch, but I think his cognitive skills have slipped even further since then. He is terribly paranoid now and accuses my two sisters and me for his predicament; when he was in his right mind he would never have thought such a thing. As he tries to get up on his own, although he has no balance anymore and has fallen several times, the nursing facility attached an alarm to the back of his shirt; he blames us for that, too (we had nothing to do with, but we do agree with its use). Now, he takes off his shirt to be rid of it; when he does that, the nurses tape it to his back.

He still talks about everything he is planning to do "when he gets out", but most often he talks rather incoherently. I try to listen carefully, but maybe catch only 10-20% of what he says.

I will let my sisters know about the resurrection of this thread so that they can add to anything I've missed. Any suggestions are gratefully welcomed. I have to head back to Korea August 23 (I teach at a university there), so this is now especially disconcerting to me. I love my dad dearly, but it breaks my heart to see him like this; still, I visit him every day and spend quite a bit of time trying to talk with him.

Thanks!

Thomas


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