For those who care for someone with Parkinson's disease
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By Lynnie2 On 2015.06.04 19:00
My husband's memory isn't the same, but one thing he has been doing is forgetting which light switches to use.
For example we have 4 switches in the bathroom which he uses daily.
One is for the lights over the sink, one for the light in the shower and one for the fan and another light switch for the light over the washing machine/dryer.

I know it could be confusing but we've lived here for over 5 years now and up until this year he's had no problem.
He seems to have more confusions when getting up at night as it's darker, and during the day the light also needs to be turned on.
I have put masking tape over the top of the switch , labeling them hoping it might help, but I was sleeping last night and didn't hear anything.
He also gets confused with the living room lights and the dining room light switches which are next to each other.
Does you PWP have problems this way?

By makrivah On 2015.06.04 21:02
In a word, YES.

By LOHENGR1N On 2015.06.04 22:01
He's probably still foggy from the anesthesia when his lung was operated on it takes a long time for the Parkinson's brain to recover if it ever does.

By Lynnie2 On 2015.06.05 16:46
Well it seems to be more foggy when he's tired.
The other day I had a lengthy eye appointment in the city and I was away for over 6 hours as the specialist is very slow, etc. (long story) anyway, it was 6 p.m. and time for dinner and I had made a stew to warm up for it. I was still at the doctor's office at this point.
I called my husband and told him to take the stew and put it in a pot and warm it up on the stove, but make sure to stir it so it wouldn't burn.
I called about 45 min. later and he said he was trying and I said I'd be home in 30 minutes which would be 7:15 p.m
When I got home I discovered he had the stew on the stove with the electric burner under the heavy bowl and not in a cooking pot. He also had a large EMPTY glass bowl on the other burner with the heat under it.
Thank God I got home when I did and the stew was cold to begin with.
The bowls were okay and not damaged at that point as the burner wasn't on that long, but it could have been worse.
I won't be asking him to warm anything from now on.
You could be right about the anesthesia making him more foggy, but we couldn't do anything different as he needed surgery.
We see the MDS the end of July so we'll talk things over then. In January I mentioned that his mind wasn't the same and they said they could possibly give him something that Alzheimer patients take but didn't want to at that point as the surgery was pending. I don't know if that's the answer. Wouldn't it make him more fuzzy? I think the Parkinson's meds, Sinemet are bad enough on the system. I often wonder what he would be like if he hasn't taken that medication all these years............

By ResistanceFutil On 2015.06.06 09:08
We bought a motion-sensor night lite off of Amazon for the bathroom. It was very bright and worked well until it just quit after a few months.

My husband relies on nightlites for his several bathroom breaks after dark.

My husband is also having more memory lapses and more issues with executive functioning. This is not easy to witness or live with.

By makrivah On 2015.06.06 11:58
I agree that The physical signs of PD are hard to watch. I can only imagine how my husband feels. However, the cognitive losses are heart rending for both of us. He is aware of his diminishing word recall, loss of day of the week,etc. he scrambles messages, gives up tracking conversations in groups, hardly tries to start a conversation with me. Just the loss of his company is tragic, not to mention his internal suffering. He too has tried to pitch in making dinner. Luckily, I came home at the heavy smoke stage before flames erupted. I'm sure, no I am positive he is suffering from depression. When I spoke to his doctors, I was appalled when they directly asked my husband if he was depressed. Of course he said no, and that was the end of that. Yes, indeed. This is hard to witness. My beloved husband has become a shadow of his former self.

By Lynnie2 On 2015.06.07 14:10
I know that is my husband exactly.
It pains me to see him sit in his chair, drooling.
Yesterday his nephew came to visit and stayed for lunch. Afterwards we were sitting on the deck and my husband was on the chair with his head bent over sleeping and drooling.
I told his nephew that he can't help it, but I tried to keep my husband awake.
It seems after lunch he is more sleepy.

Lately I've noticed if he has problems getting dressed especially getting his pants buttoned up and the drooling starts too.
Today he was getting ready for church so I gave him some gum to chew and it seemed to help and he continued to chew it in church. (he no longer sings the hymns because he reads so slowly).

I know he must be depressed as the other day, I asked him what was wrong and he said ......."Life"
He is only 67 and a normal life has been taken away from him and it is so sad. He in his 8th year of PD.
People ask me if there is anything they can do to help and that is comforting.
Someday I'll take more of their offers to help as the future will be harder as you all know........
I appreciate the many people on this forum too, and it's comforting, (If I can say that) to know that I'm not alone in this journey with my spouse........ Thanks guys and gals...........

By umajane On 2015.06.07 19:12
This is my husband exactly too. The drooling however is so much better since he got the Botox shots. He is due for another in about 2 weeks.
When he gets nervous or concentrates really hard the drooling is worse.
He is sleeping right now and hope he stays awake when friends come over this evening.
Yesterday was our anniversary..I was surprised he remembered the day...but probably because I had been talking about it. I remember all the special anniversaries and this was special too just because this is where we are at 75 and 76..
I am learning not to to be too disappointed when things don't work according to any schedule...I end up missing a lot of things but when I really need to be somewhere important like a grand kids graduation.i am sure to have a caregiver here.. The ladies that come are so helpful and he enjoys their company..That part is great but I so wish for him that he was more engaged in life, sports and family.
The good news is he is not in pain and almost never complains..

By Lynnie2 On 2015.06.08 07:41
He gets Botox for the excessive blinking and it helps. I don't know if they would give him the Botox for drooling yet.
The other thing is we have a seasonal trailer that we keep at a park and it's getting harder for him and me too.
Our good neighbors help to open it and close it in the fall and help with the propane as my spouse has difficult with the strength in his hands and back to do such things. He's always been able to do things and it pains me to know he isn't able anymore, but that's been happening for quite a while now.
He walks around the camp, but mostly sits in his lawn chair or recliner inside and falls asleep.
I do the thinking about the food and packing the clothes etc. but we don't stay continually through the season as we have appointments, etc. back home so it is the lugging back and forth with food and laundry, etc. I have doubles of everything, e.g shampoo etc. but I usually do the laundry back home.
We are thinking about selling it but we've camped all of our lives and it's hard to give it up.
Our granddaughter is coming this summer, but there isn't that much for her to do at the trailer.
I don't know what to do. We've only been there for a week so far so maybe we aren't giving ourselves a chance.
Our neighbor said he could help in any way.
It's also hard for my spouse to talk to people as the words don't come easily and you have to wait and wait for him to get it out, so he doesn't socialize except a little with our one neighbor.
I walk around the camp and talk to people, but our best friends no longer camp, so we don't really have any close friends there anymore and it's hard with the way my spouse is to make new friends.
If we decide to sell we should be making that decision before the next season......... I don't know.
I think it's much easier staying home where he is used to every thing.
On the other hand it's a change for him to watch the ships when we go to the river or go to various places in the towns. Winter is so long and we stay inside and don't go very far during those months, so having a trailer is something different.
Maybe we should keep it a while longer and maybe next year make the big decision. His memory isn't the best, but maybe we are just giving up and that isn't good to give up, is it?

By umajane On 2015.06.08 16:13
Try not to give up yet..A chance of pace is good even though its a bit hard on you.
We have an RV too and I now do all the work..but it's a nice change of pace even though things are much easier at home.
Change is always interesting...good luck with your decision

By Lynnie2 On 2015.06.08 16:30
Thanks Jane for your advise.
I don't really want to give up yet.
Do you also go back and forth to the trailer like we do?
That's the worse part as we don't stay there continually during the season. I have to remember what food was left at the trailer although I take the perishables if we are away for any length of time.
It is a change for sure and I enjoy going to different places, craft shows, shopping somewhere different even though I have to do all the driving now.
I think I was just tired when we opened the trailer last month as we had been away a few days before and driving over 6 hours on the way home and then and I had to put things away, do laundry, get groceries, etc. and then organize for the I was stressed out. I won't do that again.
I should have waited to go when I was more rested. It is just that I have to think of everything know what I mean.
Maybe you husband is different but my husband's mind is getting worse for remembering things.
For example I didn't know where the shut off/on lever was for the water tap outside our house and he couldn't remember exactly. I asked the neighbor and he was able to help me.
The neighbors around here a very helpful, so we are lucky that way...
Anyway, thanks for listening to my complaining.......... and thanks for your support............:)

By umajane On 2015.06.08 19:56
Yes I do EVERYTHING!!!! We sold our trailer last spring and after a few months we decided that if we had an RV I would have to do it all.
Last summer we bought a 28 ft class A and I learned how to drive it. I was really scared but it's not too hard. The hook-ups can be tricky and I usually ask someone at campground for a little help. I load it, prepare it and set it up. However it is so wonderful at the beach where we camp and still worth the work.
I try to get help loading up and then when we get home have some here to help. Of course it's easier at home but boring too..
I have found a few caregivers so I get to go play from time to time as my husband just doesn't want to go and is happier in his world. Sad but true

By Lynnie2 On 2015.06.08 20:21
That's great for you. We've had 5th Wheels and travelled out to the east coast and west coast with it and to Florida and camped at different campgrounds in our province. I've pulled it too, but he did most of the driving back then.
Anyway if we have help at the camp maybe we should stay as long as we can as they seemed to be looking over us. and we can take our time to think about things.
Take care
Lynnie :)

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