Helping my father through parkinsons

pog it

Hey all I'm a bit stuck in a rut now about how to deal with my dad's parkinsons. He's had it for about 5 years now and it came on after my mam passed away. We're from a rural area and he has just lost his brother who was probably his best friend. We have good neighbours but my Dad is quiet and while he's friendly and well liked he isn't great at making on people or socialising really. So losing his brother has hit him really hard as they were so close and saw each other very often.

So he has lost weight especially lately and I'm starting to get the feeling he is just whiling away the time.. eating a dinner, eating a bit for breakfast and supper but not putting too much effort into it. He's not as mobile as he used to be and can't enjoy a football match or even go to mass without worrying about the parkinsons so he's really restricted about what he can do. A lot of it is anxiety caused by his own fear and self consciousness.

We all work and study in other places but see him every weekend and sometimes the odd day during the week and we're all taking time off to look after him even more in the coming weeks. But I'm at a loss as to what to do. He turns down all suggestions of little past-times/hobbies and will just about read a book or watch tv alright but has no desire to try anything new. Anyway he is curtailed by the parkinsons.
It hasn't developed too bad or anything. He can drive short distances and goes for a pint one night a week most weeks but this is sort of the height of it and I don't know what we should do now. He can't do anything too physically demanding like gardening and just goes for short walks.

Has anyone experienced this and come up with some good ideas about how to help someone in this situation? I'm starting to feel that now is make or break time as he won't do it for himself and we have to up the ante.

bon ami

Sorry to hear about your dad. However, he is lucky if he has it 5 years and he can still get around. My mother suffered form Parkinson's and after 3 years became wheelchair bound. When my Dad passed away we had no option but to move her into a Nursing Home where she could get the 24 hour care she needed. Can I ask you has your Dad got difficulty speaking ? Does he repeat things constantly? Does he have a problem walking through Doors and does he have the Parkinson's Mask? Is he on any medication for his Parkinson's?

These would be typical signs of Parkinson's as it develops

visit http://www.parkinsons.ie/

Hope it is of some help

pog it

bon ami wrote: »

Sorry to hear about your dad. However, he is lucky if he has it 5 years and he can still get around. My mother suffered form Parkinson's and after 3 years became wheelchair bound. When my Dad passed away we had no option but to move her into a Nursing Home where she could get the 24 hour care she needed. Can I ask you has your Dad got difficulty speaking ? Does he repeat things constantly? Does he have a problem walking through Doors and does he have the Parkinson's Mask? Is he on any medication for his Parkinson's?

These would be typical signs of Parkinson's as it develops

visit http://www.parkinsons.ie/

Hope it is of some help

Thanks Bon ami. Sorry to hear about your own situation. It's not easy.
My dad is doing well with it I know, he is on medication and has an excellent specialist taking care of that side of things. He does get a little confused here and there which is very minimal and regards getting around he can walk around no problem but just can't go for long walks or anything, just short ones. He doesn't havethe mask, I'd never even heard of that. And regards speaking he is great, but his writing has gone and he gets us to sign forms and that kind of thing.

So I guess it's motivation and confidence he needs but he's not the type to go see a pyschiatrist or counsellor. He's very old fashioned and set in his ways. Thinking of getting homecare in which again will be hard to talk him into.

sallystar

It must be very hard for you to be away from your dad and constantly worrying about him. Could you get the Public Health Nurse to call in from time to time and maybe discuss getting some home help for an hour in the morning and the evening? It would be great peace of mind for you and some company for your dad. Is there any day-centre nearby that he could go to for even 1 afternoon a week?

pog it

sallystar wrote: »

It must be very hard for you to be away from your dad and constantly worrying about him. Could you get the Public Health Nurse to call in from time to time and maybe discuss getting some home help for an hour in the morning and the evening? It would be great peace of mind for you and some company for your dad. Is there any day-centre nearby that he could go to for even 1 afternoon a week?

The home help would be great if he'd agree to it! I had the public nurse call out to talk about his diet and she offered home help and a meeting with a dietician and he told her he didn't need it! He thinks he's eating great which is the problem. So I think we'll have to push the home help option on him and just plan it ourselves though he might be a bit eh annoyed if we do!

Also he wouldn't like any of us to be living at home. We're in our mid- late 20s and one of us in college and he wants us to be living our own lives. Up to now he has been managing fine at home with me bringing him on day tours on saturday, shopping, seeing his brother, etc. It's just he will have a longer week on his own now without the visits from my uncle and I'm afraid that will affect him.

I'll look into the day centre thing. He's a proud man too and he turns down a lot of sensible ideas out of pride and what would the neighbours think type thing!

Neyite

dad didnt want a home help either when he had parkinsons - we told him that it was a fas scheme, and if he didnt 'help' her by letting her be his home help she would lose her dole. so he 'helped' her

the local old folks home have some great activites - dad went a couple of days a week and the had concerts and cardgames, but his favourite, surprisingly was the masseuse (no clothing removal) she massaged his arms, hands and shoulders and it really helped his parkinsons.

he even got swimming lessons to help with the parkinsons, it was one-on-one with his coach and he loved it.

practically, fill up his freezer - parkinsons sufferers have problems with their 'swallow', finding it drains them to eat a proper dinner - just chewing exhaused dad, so 'wet foods' like stews and soups are great to put in the plastic chinese takeaway containers and just the right size to go into a pot with a few spuds. get some Build-up from the chemist, his doctor can prescribe it so he might not have to pay, its a milkshake type in a carton packed with nutrients he can digest easily.

+1 on the district nurse - these ladies know all the ways and means to get resources lined up. is he religious at all? i know a widow who joined up the Catholic Grandparents Association and they do loads of tours around (no grandkids necessary) she loves it, but it might not be up your dads street. the wheelchair association is a great organisation, i dont think he needs to be wheelchair bound - any mobility restrictions are reason enough to join. (could he join as a volunteer?)

is there security in the home? we installed an alarm and we all chipped in 250 for it. theres a panic button, emergency lighting for power cuts, outside flood lights, sensors in the hallways and it texts me and a neighbour if its triggered, so we can get onto the local gardai to check it out until we get there. like you guys, we are around the country so nearest is an hour away. this gives us the peace of mind. does he have a dog? that could be a great companion to him.

hope these are some help to you, but if you have any more questions, you know where to find me!:D

pog it

Neyite wrote: »

dad didnt want a home help either when he had parkinsons - we told him that it was a fas scheme, and if he didnt 'help' her by letting her be his home help she would lose her dole. so he 'helped' her

the local old folks home have some great activites - dad went a couple of days a week and the had concerts and cardgames, but his favourite, surprisingly was the masseuse (no clothing removal) she massaged his arms, hands and shoulders and it really helped his parkinsons.

he even got swimming lessons to help with the parkinsons, it was one-on-one with his coach and he loved it.

practically, fill up his freezer - parkinsons sufferers have problems with their 'swallow', finding it drains them to eat a proper dinner - just chewing exhaused dad, so 'wet foods' like stews and soups are great to put in the plastic chinese takeaway containers and just the right size to go into a pot with a few spuds. get some Build-up from the chemist, his doctor can prescribe it so he might not have to pay, its a milkshake type in a carton packed with nutrients he can digest easily.

+1 on the district nurse - these ladies know all the ways and means to get resources lined up. is he religious at all? i know a widow who joined up the Catholic Grandparents Association and they do loads of tours around (no grandkids necessary) she loves it, but it might not be up your dads street. the wheelchair association is a great organisation, i dont think he needs to be wheelchair bound - any mobility restrictions are reason enough to join. (could he join as a volunteer?)

is there security in the home? we installed an alarm and we all chipped in 250 for it. theres a panic button, emergency lighting for power cuts, outside flood lights, sensors in the hallways and it texts me and a neighbour if its triggered, so we can get onto the local gardai to check it out until we get there. like you guys, we are around the country so nearest is an hour away. this gives us the peace of mind. does he have a dog? that could be a great companion to him.

hope these are some help to you, but if you have any more questions, you know where to find me!:D

You're a pet, thanks a mil for that... really going to help!

helimachoptor

Op, sorry to hear its a tough disease and I watched my grandmother go through it. After her husband died she really deteriorated though probably with the shock of losing him so if your dad and uncle were that close it could also have an negative effect on the symptoms.

There isnt a lot you can do, but try to be "normal" with him. My granny would prefer to spill half a glass of water over herself and manage to drink half it than have it given to her and she just use a straw.

Also if he hasnt already he may begin to develop problems getting to the toilet etc and/or having accidents, dont get angry or upset just treat it like its not big deal and if needs to be tell him when you were a baby he had to clean you up all the time

Some good points above on the district nurse etc, having a very large family 19 sons and daughters meant there was a huge support structure for my granny. Coming towards the end she obviously got worse but i remember for my debs she got herself out of her chair and walked outside unaided to get in a picture with me and the limo, still have the photo and is a really treasured memory.

anyway best of luck!

LegacyUser

Hi OP
My late father in law had PD for about 5 - 6 years before he died (death was not directly related to PD he got blood infection from cut sustained on fishing trip). He was a member of P.A.L.S. a support group for PD sufferers, it is Dublin based but as I understand it they have members around the country. Their web page is here http://gofree.indigo.ie/~pdpals/.
They have some good tips on feeding, bathing etc. and how to counter act some of the symptoms.
A thing while helped my father in law was he was quite active being involved in a fishing club and walking club. He also made no secret of the fact he had PD and hence never got a "bad reaction" from people. I think this is an issue for your father, tell him not to worry about the neighbours (I know its easier said than done) and I am sure he would be surprised at how supportive they would be if they know his condition.
My thoughts are with you and your family.

10-10-20

Very good and informative post Neyite.

RhubarbCrumble

OP, have you been in touch with the Parkinsons association at all? My uncle was diagnosed with Parkinsons a couple of years ago and found the association very supportive and helpful. He also said that meeting others in the same situation made him realise that he wasn't alone, and that the people he met had a better understanding of his situation as they were going through the same thing themselves. Like your Dad he would have been a quiet man as well, and not the best for socialising, but it's done him the power of good.

Your Dad is very lucky to have such a caring son/daughter by the way
(Sorry, not sure if you're male or female)