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maral77

My typical day as a Caregiver

46 posts in this topic

Well DH after being released on the 13th of March, and having four different nurse visits at home, 6 visits from PT, the visit from the OT, and down now to two more visits from the Speech Therapist , and for all of that is doing ok, excpept for the Speech which has gone to far and really as the Speech Therapist said should have been started a year or two ago. 

 

However, he now does not get up at night to the bathroom, but just goes in his depends. It is not because he cannot get up he can, and I have a urinal right by his bed and he can and knows to use it but does not. Now he is getting up and taking the very filled depends off and not putting another one back on, which of course now all the bottom sheets, all the pads I had laid down on top of the mattress pad and down to the mattress is soaking wet. So i just ordered a full size queen size rubber pad to lay on top of the mattress and then I will put the mattress pad down and sheets etc. Will have to strip the bed but will save the mattress. Another thing he is now doing, during the day when he has to go to the bathroom is completely undress. WTH all he has to do is pull down his pants which has a elastic waist, no buttons no belt nothing and then his depends. Nope completely undress. So I have now dressed him from top to bottom twice this morning. 

 

There I vented now, and all is good for now, he is out eating breakfast, and will handle what has to be handled the rest of the day. I am sorry and I do believe someone somewhere on these posts said one time PD SUCKS. 

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Maral,

 

Have you talked to the doctor about his meds and the things he is doing? Is this the start of Lewey Body Dementia or something possibly? Sounds utterly frustrating.

 

Coach

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A few years back when we were in the process of moving I had our curtains removed for the day of the actual move.  My family and I sat on the living room sofa waiting for the movers to come when my mom all of a sudden got up and took off her pants. Luckily there were no one outside to witness this and I quickly took her to the bathroom to put it back on.  Fast forward 6 years later and she no longer have the desire to take anything off.  It's quite the opposite now.  No one can take anything off her body or out of her clenching fists. 

 

My mom wears pull ups 24/7 and she still leaks out in bed even doubling up her underwear with a booster pad.   She sleeps on a liner on top of the sheets and the sheets have a liner under that too.  It is really a big hassle and quite hot in the summer time.   A few times while taking her to the bathroom in the middle of the night she would leak out of her pulls ups while walking to the bathroom and there's another mess to clean.   I know how frustrating it is.   I wish I can vent freely  and tell everyone what I want to do but I'm afraid of having that repeated somewhere later on another forum and be reported simply for thinking of a way out.   It is most unfortunate with what we have to deal with.   I feel your pain.

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My husband sometimes takes his diaper off during the night as well. I purchased a motion sensor. When he is moving, an alarm goes off by my bed and I get up to check on what is happening. I will admit my sleep is disturbed more often than I would like, but I keep him from taking his diaper off and falling. I have a moisture proof cover for the mattress. On top of that I have several pads. Then I put on the sheet. I usually only have to wash the sheet and replace one or more of the pads. I buy an overnight diaper through Amazon called (overnight) Tranquility Premium Protection. They are more expensive than daytime diapers, but much more absorbent. Caregiving is hard. We need to help each other with strategies that we have found to make things easier. Where else could we have these discussions?

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I have the upmost respect for you all...

 

Where would we be without our amazing selfless Care Givers...

 

Thank you for sharing your day to day struggles. We can do nothing else but learn from your posts.

 

It's unspeakable that someone on this forum would take your struggle and make light of it...shame on them..

 

This is your place to speak and have a soft place to fall...

 

D

Edited by Discovery
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Maral, I'm in the same boat as you.  Dad gets up and wanders around in his room; if he has to go to the bathroom, he doesn't put another one on.  He might pull it back up (even if it's wet) or he might take it off.  He doesn't have the dexterity to use a urinal.  And he too thinks that he has to remove pants, socks, etc.  But he tries to leave his shoes on.  Go figure.  

 

I make up his bed like genden does:  waterproof mattress pad, a couple Chux-type pads, sheet, then a washable bed pad on top of that.  Luckily the mattress stays dry so far.  I had the pharmacist review his meds; no reason for his (recently) increased confusion & being up more at night.  His neurologist recently said that he thinks this is actually Lewy body dementia, rather than Parkinson's.  Who knows?  It seems to me that it hardly matters by now - the end result is the same & it's too late for any proactive measures.   When I first brought him down here I had these hopes of him getting a little bit better, or at least not any worse at least for a while.  Haha!  Now it seems like he's going down hill & picking up speed.  

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Thank you for sharing your day to day struggles. We can do nothing else but learn from your posts.

 

 

 

D

 

 

Learn from our posts?   My advice would be: 'Don't stick your head in the sand.  Plan for the worst & hope for the best!'

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My husband is getting to the point where he is having trouble feeding himself. For some time I have been cutting his foid up in bite size pieces. Now he has a hard time getting food from plate to mouth. He also has trouble finding his plate. Lately he has been stabbing with his spoon or fork down in his lap. I show him where his plate is, but his spacial sense is impaired and I spoon feed him. He has the dexterity, but his brain isn't telling him where his food is. I have had his eyes checked. The ophthalmologist tells me structurally his eyes are fine, it is a brain problem.

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I've been feeding my mom for years now.  She likes the VIP treatment.   If I let her do it she would pick up a piece of food and put it on the table and play with it.  When she was going to the daycare center she would take other people's food off their plates and eat it. 

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Well first of all everyone thank you for sharing your experiences. I now know of course that I am not the only one having to deal with this new problem, and I certainly do not have my head in the sand as I am also fully aware it will get worse, and other things will happen. I deal with each thing as it comes. I just had to vent this morning, and now I can go forward. I ordered a full size waterproof pad that I will put over the mattress. Right now I have smaller pads that I had laid down on top of the mattress, but they had moved and was bunched up so the mattress also got wet. His doctor is fully aware of his problems, and he was the one that told me to get the pads, and he wears real heavy depends that he gets from the VA. But when he has gone two/three times during the night in them, they can only hold so much. I also purchased a couple pairs of mens adult rubber pants (reminded me when my children were babies and I had them over their diapers,) that I will at night time only, put on over his depends. 

 

He can still feed himself, but has gone to a large spoon to eat most things, I also have to cut up alot of his food, and he at times has more food on the floor that probably in his mouth. And I am fully aware that in time I will have to feed him. I am so glad for this site, as it is a comfort to come here and read everyone's posts and at times knowing the problems I am having I am not alone. 

 

Having friends, family and our Primary doctor telling me I should start looking for an assistant living place or nursing home. Well I am sorry, I will do everything I can to keep him right here where he has built, lived for 60 years, for as long as I can. And I do not feel that time has come. My post I know will sound like I do not want to take care of him, but that is by far not true. I just need to vent, and reach out to see if others are experiencing the same or similar. Realizing DH cannot help it, and for me to love, take care and do all I can to make his life a little easier. 

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Oh the rubber pants.  I bought a pair and they are so tight and hot.  I tried them on myself and it's been in the drawers ever since.  I might have mentioned this before but a few years ago I bought an alarm that you put in the diaper to sound off when it's wet.  What a waste of $100.    It either sounded off for a slight trickle to never going off because the wetness wasn't touching the sensor.   I was a stress mess when it did go off cause it sounded like the world was ending.  Digging it out of the pull ups was a nightmare.  

 

As for chopping up  food I have been using scissors but just today I went on Amazon and bought a 4 cup food chopper.  I hope it will do the job for everything.  My mom has very bad teeth now so I don't want to make it worse. I still want her to eat real food but just less chewing.

 

Good for you for not wanting to send him to a home.  I don't think I need to repeat my stand on that.  We are all very much alike and have the same goal.  We all want to make our loved ones happy and secure.  

Edited by miracleseeker

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Maral, my comment about head in the sand wasn't to you, but to any who think they don't need to have Plan B.  We all want to live for a long time in our own house & then one day just die in our sleep.  News flash- most of us don't get our wish.  I'm just tired & ranting.  This weekend I was looking over some old PCP visit notes in my dad's electronic medical record.  I noticed there was a diagnosis of 'memory loss' 3 years ago- about the time he first saw a neurologist & Parkinson's was suspected.  Do you THINK either of my parents said anything about it in that time? No.  Head in the sand was like their religion.  They just figured they would live out there in the country with no family nearby.   :wacko:      I just don't get it.

 

Oh, I have found that it helps to get up in the night to have dad go to the toilet.  That way his depend isn't overflowing in the morning.  (That is if he stays in bed)

Edited by Clueless in TN

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Clueless -  If your parents had told you about the  memory loss issue 3 years ago how would that change what you are doing for him now?

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Yes I was wondering about how hot the rubber pants might be. But going to try seeing as I already ordered them lol. Sorry Clueless all is ok. And as far as keeping DH out of Assistant Living or worse a Nursing Home, thank God we have excellent insurance and I already checked with our Insurance that they pay for Hospice Care, I would do that unless God I hope not, that something would happen to me, that is my biggest fear... I know the end results for DH, but pray every night that I stay healthy. 

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Knock on wood we all stay strong and healthy!

 

You know just think what happens when your DH over flows in the rubber pants?   Since it doesn't get absorbed the pee will just swish around in there until you pull the pants down and then it's clean up on aisle 6.   :-P

 

Clueless suggestion on getting him out of bed once to go in the toilet is what I do with my mom.  If she pees before bed then there is of course less going in the pull ups.  Getting her up around 3 or 4 will get her cleaned up  and a new pair will make her more comfortable too.   I can't imagine having her sleep in a soaking wet clothes all night.  It happens all the time that she leaks out to her upper back but I try not to have it happen all night.

Edited by miracleseeker

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Miracleseeker, that's hard to say.  I know i would definitely have urged them to plan for the time when they need help & can't do it on their own.  They had the savings.  I tried to get them to move down here in 2014, but they both said no, we couldn't possibly do that.  After nagging & suggesting for a while, we gave up.  Then mom dies & here we are.  

 

At the risk of being crucified, I will say that I never had any plans to be a hands-on caregiver for either parent.  Growing up, I had a difficult relationship with them.  Not saying that I'm without fault, no way.  But after Dad's suicide attempt, he couldn't go back to assisted living & there was nowhere that would take him.  So we stepped up to the plate.  I'm not happy with the situation & some days I feel like i'm going down for the third time, but whatever.

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Prevail PM was what Elle used on her DH and was raving about it on an earlier thread about diapers.  Maybe Maral can get some samples?  I'm really bad with diapers so that's why I keep using Pull Ups.  Right now I'm using a German brand Molina Extra with a booster pad and then another pull up over that to keep it nice and snug.

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I hope the rubber pants work out. Please check that they do not cause serious diaper rash and galding. There is a reason babies don't wear rubber pants anymore. I am okay with letting pads soak up overflow and washing the sheet and night clothes. Thank goodness for washers and dryers. I give thanks for the garbage can that gets picked up every week and the many conveniences that make this job easier. My grandmother cared for her mother who was bedridden for the last two years of her life. She was proud of the fact that her mother didn't have one bedsore. My grandmother had running water and an indoor bathroom, but very few conveniences. There were no disposable adult diapers. Grandma was a widow and had very little help. The job is hard, but it could be much harder.

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The depends are not the issue. We get them by the huge box full from the VA for FREE. And they are triple thick not like the ones you purchase at a drugstore or at Wally World. The rubber pants will be only at night not during the day They will be worn over the depends not next to the skin or worn alone. And I do not think getting up in the night and waking him up and asking him to get up and go to the bathroom would work... when would I know when he has to go. I myself cannot go unless I REALLY have to. So I disturb his sleep and my own, and he no way can go at the time I get up and wake him up. And with the amount that some mornings (not all) are full he definently goes more than once in the night. 

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I learned through trial and error that thick is not always better.  The fit is more important.  I bought a pack of Abena pulls ups that are super thick.  My mom can't close her legs when she's bed and so they leak out on the sides.   The Molina is more tapered and flatter so it hugs her bottom better.   I hope the rubber pants will help you.

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Well I will stick with the VA's considering they measured him and had went through quite a ordeal before they choose the ones he has. They fit very firmly but yet not extremely tight so that they are cutting into him. But when one goes my guess up to three times a night in a pair I really do not think any would hold that amount before it would leak through all the thickness. As far as the rubber pants I can only try them. They were suggested to try by his neurologist so it is worth a try. Sure they have helped some or he would not have suggested them, so time will tell. 

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Check several different sites and the reviews and description sounded the best was from Fetware. Checked several Medical Supplies that are not far from us and they all were real thin and appeared one could just put their fingers right through. So that is when I went online. 

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