My husband has had PD for over ten years. His sense of reasoning and judgement are way off. He drools a lot so we need a bib most of the time. He falls a lot, and is not safety minded because of his sense of judgement. I have not handled it well a lot of the times because he is very stubborn as well. I feel at this point I have a child on my hand who will never grow up. He now attends the Adult facility at the VA three days a week which has helped a lot. He is very apathetic which is part of PD. Still I feel for him because he didn't expect this to happen and never really enjoyed his senior years. He was 62 when diagnosed. And at times he is still a sweet gentle person. It is very difficylt to have to take over every aspect of a spouses life. There is no one to blame. I guess it is just life.

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Originally posted by mae:
Sadly , not enough people give that service to the many who would benefit.In the end they also benefit.

Mae: How right you are! When and only when my mom is at day care do I not think about her at all!!! It is such a relief, I must say to take her to the AZ unit and know that she is safe. When she is at home, I'm always a little uneasy even though I have someone checking on her throughout the day. Sadly, cost I think is the biggest obstacle.

Having interaction with others is such good meds.At first they are hesitant out of fear.They do not know the person and they are taken out of their compfort zone.
They give them a change from those they reside.
It also gives the family a good feeling of not completely cutting the loved one off from out side forces.
If the person is good they can break down the barriers of trust and make a difference in an afflicteds life.
Sadly , not enough people give that service to the many who would benefit.In the end they also benefit.

My 72 y old mom has PD w Dementia. I can tell you that it has been a rollercoaster but she has done very well with day care. Her movement is better. She can actually bend over and pick something up from the floor. OK, now for most of you, that’s real scary it was for me at first. However, instead of telling her not to bend over because she might fall. I try to encourage her to be independent and hope that she doesn’t tip over. In the end it is all about reacting in a responsible manner and providing tools, equipment, services that work for your particular situation. Not everything that works for one person will work for someone else. I have found that’s trial and error but also to make sure you the caregiver moves on with your life. Your right Op., it’s not right for you to destroy your life in order to take care of your mom, she wouldn’t want you to do that.

As I understand it, Senior Peer Support is a volunteer program that's just for companionable visits to an elder's home, by other seniors. They have no purpose but to chat, maybe play cards -- just be a friend. The convalescent hospital recommended them when they dismissed Mom but she's resistant to the idea. Afraid she won't like whoever comes over, which is of course possible. I think we should try it, if there is anyone available who could come by now and again. We can always politely bow out if there's friction and since Mom does like chitchat, I think she'd find herself looking forward to visit days. And she really needs something to look forward to.

(I like Op. Op sounds like it might be short for Optimistic. ;-)

Op,(mind if I shorten your name? most of us end up as initials, BC, BG, MB, BWB, etc). I tend to baby my Mom, too. Sometimes it does seem they improve more with some one else who is more experienced, seen it all before, and is a bit detatched from the emotional aspect of all of this... Each of the CGs we have worked with has brought something to the table for me to digest. A major issue has been that at times I must seperate my role as CG and my place as "daughter". Most of the time, I can pull it off,as I need to, but not 100%.

If you can get someone in to "visit" her part of the day, or a few days a week, it will be invaluable. Give you a chance to retreat for a while, and observe some practiced person's tricks.

I am interested in the "Senior Peer Support" you mention. I have not heard of anything like that here. How does it work? Is it in the USA? Sounds like a great project to look into. Thanks for any info you might have.

We had a taste of convalescent hospital care when Mom was there for two weeks to recover from a bladder infection, dehydration, and to get physical therapy when she wasn't responding to it at home. (We did keep trying to get her to drink, and the home care nurses visited regularly to check her condition, but she just wouldn't cooperate and it led to trouble. Now she gets enough water because she takes it seriously. She tends to think medical folks want her to do things just to boss her around or as part of an experiment. I believe that is part of the dementia.)

While I am looking for a better facility because they were overcrowded, she did improve a lot in their care. They didn't baby her as much as we did, and told us we were doing too much for her. Of course, she knew she'd come home when she was well enough, so that put a different slant on it than moving to a nursing home for good. She had a goal to work towards.

We'll keep her at home as long as we can take it and as long as it seems helpful to her, but I cannot destroy myself taking care of her. That just doesn't seem wise for anyone's good. It is possible we can talk her into hiring a home care companion for part of the day, who might occupy her more than I do. She's refused to let me call Senior Peer Support for some companionship, but she may change her mind. Who knows? Right now, we're taking it day-by-day.

Opinionated, Be assured there is no set personality for being a caregiver.We all began this journey with doubts.This forum gave me the information I needed to go forward.If you could get help with mom that may ease the stress you are experienceing.Something the best caregivers go through.
My mother was one to forget her walker as she had broken her hip earlier.I just watched and kept reminding her.
We can decide for you what to do .I will tell you NH are not always what we are lead to believe.They , I think, are labeled as humans and have a full days work when at a facility.
Too many are their for the money and lack the skills to be responsible for a loved ones well being.When you have a good one, you count your blessings.Many times you have got to spend alot of time at a NH to assure a loved ones care.
It sounds as though you have made up your mind .That is for you to decide.Just be prepared to pitch a tent out side the NH.
There are many who found they were unable to cope with caregiving.Thank god, many more who have stood the test of time and this forum is a testiment to that.

Thanks for the thread links. I'm sure they will be useful. Mom has already fallen once because she can't remember the therapist's instructions on safe movement. Both the occupational and physical therapist warned all of us to brace for it. When she did fall, I didn't know till the next morning at breakfast when I saw the bruises on her arm and face because she didn't call me for help at the time. She tends to hide things which I'm sure is not uncommon.

Thank goodness, she didn't break anything, which is miraculous considering her frailty. The next time we may not be so lucky. I do know that the nature of Parkinson's makes falls inevitable. Her room had been set up as best possible for a clear path to her bathroom, throw rugs and other trip hazards have been removed from the whole house, and there are grab bars everywhere the occupational therapist recommended them.

The main problem is Mom wanders away from her walker if she thinks no one will catch her at it or if she's confused at the moment, and there's not too much we can do about that. Well, except to keep reminding her. (We have souped up her walker with saddle bags for carrying odds and ends, which helped a lot. Now she doesn't leave it "just for a second" so she can go get a magazine from the next room.)

Opinionated, Mae is a very special care giver for sure, but much of her advice really makes things easier for all of us. It is true they do not progress in learning as a child would. To expect this sets us up for failure. Give your self a break here. Be safe. Check the threads on fall prevention and What to do in case of a fall.

http://eldercare.infopop.cc/eve/forums/a/tpc/f/5506016051/m/5071083034

http://eldercare.infopop.cc/eve/forums/a/tpc/f/5506016051/m/9441066924

In your intro you mentioned agoraphobia, that must make things especially difficult, but maybe this is what will help you through that.

I will admit, that not all are able to do this and it is sometimes the case that a loved one is better off in a good AL or NH with a close eye. Please don't make a hasty decision though. Being in a home doesn't mean the job is over. Sometimes that doesn't help at all. Take a few deep breaths. As Mae said there are lots of tricks to the trade and we will share what we have learned. It makes a huge difference.. I would have caved a year ago if not for these CGs here.

You sound like an ideal caregiver, Mae. I'm afraid my personality just may make me unsuited for it. We keep thinking of a nursing home as though it is sentencing Mom to prison but if the people there can be more patient, it really may be a better place for her.

Opinionated, welcome.I cared for my husband who had parkinsons with Lewey Body Dementia.
First, the coreect meds for the parkinsons makes so much difference.
I too had to constantly remind my husband about the use of the walker.How to get up from the sitting position and how to sit down.Also my mother and aunt.
With Parkinsons it is difficult for them to get in and out of the tub.I liked the walk in shower best.No lifing of legs and having to grab the grab bars wqlong with getting out of the tub.
If you become impatient with her she will give up.She is quite aware of her difficulties and your getting mad only makes her want to do nothing.I know it is not easy but think how difficult it is for her.I hope you have strong grab bars.It makes bathing so much safer and easier.The bars allow her to have support .Important for those with parkinsons.
You will have to accept you will have to repest things over and over.Small task when it could mean the difference in her safety.
I cared for my mother and hubby who repeated the same things over and over.So I answered over and over.She does not recall what you have told her.Unable to absorb new information.

Many times we have to make boundries in certain areas.If she has a preferance with clothes, buy more then one of the same outfit.
Same with food.You will have to learn ways of getting her on your side of doing things.
You do not have to make different foods all the time.Many times using deserts helps to get them to do what we want.
Stimulation is very important.Not easy when you see the person all day and have other responsibilities.
Pictures in a scrap book is good.She may recall those who are from the time before she became ill.
I know it is easy to become flustrated.Take it from me, it does not change the situation.
Actually, you will become the victim of guilt if you loose control with her and become flustrated.Try to imagine it was you on the receiving end .Try to think of your self experiencveing what she is going through.
If it continues to get you down, get something from the doctor.I know that is not waht you want to hear but it may assist you in dealing with this.
I am a companion for a beautiful lady with dementia.She recalls the past but unable to asbsorb time or new information.She tells me the same stories over and over.That is what she recalls I answer her over and over and love it.
I love listening to her stories.Tells me so much about her as a women , wife and mother.
There are areas where she has self doubts.I do all in my power to encourage her and tell her she does everything so good.I never put her to shame.That would break her heart.
Even with the age difference and her problems we have so much to talk about.She reminds me of myself in so many ways.
In the heat of the day we began to see our selves as victims.They are the victims of such horrible diseases that robs them of their dignity and ability to function as that had always done.
I try to turn all of her negative thoughts into positive ones.I praise her with every thing I say to her.Yes I stroke her ego because that is what she needs.

quote:

I feel at this point I have a child on my hand who will never grow up.

Yes! My eighty-two-year-old mom has Parkinson's and I find myself thinking that often. Really often. I try not to patronize her but it is so much like dealing with a child, yet without the hope of improvement.

I've been working on teaching her how to get into the tub for a month now, yet each time we must repeat the same routine:

"OK, now lift one foot over the edge of the tub. No, one foot. No, one foot. No, not both feet at once, just lift one foot at a time. GOOD! OK, now the other foot. No, you don't want to rest it on the edge, put it all the way in the tub. No, all the way in the tub. All the way..."

It's mainly when learning new things that this happens. We can still chat about gardening on an equal level, for instance and once she's sitting on the bench in the shower, she remembers how to wash herself well enough. It's new data that is very, very hard to get through.

Unfortunately, now that she's having more physical problems, there are a lot of new things for her to learn, like using the walker and how to get dressed safely. The therapists did the best they could but they aren't coming any more because they said it's up to her now. They've given all the instructions they can give.

Some days I have enough patience, some days I don't have patience but bite my tongue, and other days I eventually yell in frustration which always makes me feel bad and doesn't do much for Mom, either.

It's when she does things wrong that endanger her that I become most upset, like pulling herself up from a seated position using the walker. She's been told by everyone, dozens and dozens of times, how to stand correctly but she still insists on doing it in a way that threatens to crash the walker down right across her face if she slips. Don't know what to do about it except keep coaching her every time it comes up.

Hello Ladies,

I just wanted to address your Parkinson's situations, as my mom was just diagnosed with it.

It's all new to me, I'm not as into it for the years you have been into it. But, I wanted to say I feel for you, I genuinely FEEL your exhaustion and your frustrations, please excuse my observations if I'm far off, I just know what I feel and of what I am afraid. The unknown, actually.

But, here's what I tell my mom.

To please take each day as it comes. If you wake up in the morning and you can do "this", do it. If you can't, so be it...if later on in the day you can then do "this", then do it. Don't label yourself, now that you know you have Parkinson's, please do not just go with that, please do not dwell on it. Please "do wht you are capable of doing" and we'll go from there. I know this is a progressive disease, I just don't know at what rate. She has moments of sadness and curiosity,(which saddens me) other moments of fierce determination (which make me smile). I give you all cyber hugs and know that you and your loved ones are in my prayers. Peace and Love and good days to you.

Marge, my husband has had Parkinsons for such a long time, years are not in my mind.There are good medicines for the physical symptoms of this disease.Although my husband is , now, bed ridden , the meds were so important.He was placed on Aricept in the beginning which was excellent for 3 years.He also did alot of drooling , which is quite common, something he no longer does.He does take Celebrex for depression and Seroquel for his behavior.His mental symptoms vary.He was and continuous to be very paranoid.Has feelings of being hurt by others and tries to respond.His greatest atribute was he did alot od walking and excercise.He would lift arm weights and use the tread mill , also would walk in the neighbor hood.His memory is of a time when he was a young person .He recalls so much of his past but is unable to grasp any new information.A good neurologist who knows the disease and the meds is the answer.He is now bedridden after a severe UTI.He eats well and is not very cognitive.He does respond to certain things he has to do to help with his care.Is able to relate any pain he may experience.No longer able to stimulate him as that time has past.I do know, when able, his being able to do things and go places and be with others, besides me was good for him.Much of his mental attitudes were directed at me.He saw me as the one who was doing him wrong and , if able, would try to react physically.He does have psychotic moments.He does have Lewey body, Parkinsons , dementia, which is not uncommon.Physicaly he has the strength of jobe.To be honest, his being bedridden prevents him from reacting to the threats he views so real.The one thing that always remained important to him is to be able to do something and be outside and have stimulation.It is not easy but with the correct meds you will be able to manage one day at a time.Only live for one day at a time and not allow your self to think what tomorrow may bring.It will not serve you well.Educate your self about the meds that do the best.His doctor never changed his meds until he would have a severe reaction or they no longer were able to do was was needed.

Hi Marge, My grandmother had Parkinson's, too. She died before it got to the stage that your husband is at. It must be very difficult with your husband being so stubborn at times. I remember how dealing with my grandmother took its toll on my mother. She would get frustrated as well and then feel guilty for getting frustrated with her as you know it is just the disease, not the person -- but still, we are all human. Give yourself credit for being a caregiver for your husband in his time of need and figuring out a way to get him into daycare three days a week (is there any way to make it five days a week?). While he is in daycare what do you do for yourself? Do you take care of your health, go for walks, have any fun -- or are you just doing errands and housework?

Marge welcome in...I am so sorry at what you and your dear hubby is going through, while I dont have any real knowledge on PD there are a few lovely people in here that do and can give you some wonderful advice. Stick around we got some pretty big shoulders here to lend and a comforting word when needed.
For know Im sendin you a warm fuzzy hug!