I can't ease his loneliness

[Daisymarguerite]

Why can't I make his days less lonely? We've been married thirty-five years and though it's been rather dull at times we've managed to stay together. Now I don't know what to do. He has Parkinson's dementia but from what I read on TP I have a pretty easy time. However life consists of dealing with incontinence, providing clean clothes, medication on time and food. He isn't able to make conversation or do anything for himself and he struggles to follow instructions. He sits unmoving for hours or sometimes he just stands and pretends to look at the paper. He watches television and he appears to enjoy that, I think. I know he cares for me but I don't seem to be able to smile at him or even talk some days. He looks so lonely and sad and I know the illness is not his fault. So what should I do? Would he be better off in a care home where he would get regular company and stimulus? I've looked to see if there are activities in the area but nothing appeals. He doesn't have interests and he's not interested in anything I am. My own energy resources are low and most things seem a waste of time when there's no pleasure or anyone to share it with.
Sorry this is a long moan but I would appreciate any comments

 

[marionq]

I think you both need help. Either a sitter or a daycentre so that he meets other people and you do too. If you had time to yourself is there something you would like to do? Exercise classes, swimming, bowling or just coffee with friends. Contact social services and ask them to come and visit and do an assessment of your needs as a carer and his needs and what they can provide for you both.

Do it soon.

 

[pamann]

Hello Daisymargariet, l agree with what marionq has said, my husband refused daycare he did go for one day, but he jumped over the fence. I tried Crossroads, its a charity no charge just pay for petrol, my husband did go out with them for three weeks then refused, l use to take him out in the car for a ride around the countryside and stop for lunch, then that became to difficult, if you are thinking of a CH get your GP to refer you to SS they will assess him, the Dr at the memory clinic refered my husband. (I did take my husband to the cinema when it rained, but had to stop when he started shouting a people on the screen) sorry you are having to deal with this awful illness, unfortunatly there is no cure, you kust have a break from caring, or you will have carer's breakdown. Hope this post has helped you.

 

[Sue J]

Hi Daisymarguerite love that name!

I agree with the others. Would your husband permit a home help at all? Whilst I agree you both need 'separate' time it can sometimes help having a third person in your environment that can support you as you care and can be stimulating for you both to have a fresh face and break the monotony.

Hope you find something that helps
Best wishes
Sue

 

[Daisymarguerite]

I think you both need help. Either a sitter or a daycentre so that he meets other people and you do too. If you had time to yourself is there something you would like to do? Exercise classes, swimming, bowling or just coffee with friends. Contact social services and ask them to come and visit and do an assessment of your needs as a carer and his needs and what they can provide for you both.

Do it soon.

Social services have been excellent. They have given OH good support after he broke his leg in April and we have help with dressing and personal care each morning. They have given us details of activities in the area but OH has always wanted to be entertained rather than be proactive so he doesn't want to do anything unless I push it. All I want is space and to be alone. It's not his fault ....

 

[Willow Tree]

Why can't I make his days less lonely? ... He doesn't have interests and he's not interested in anything I amMy own energy resources are low and most things seem a waste of time when there's no pleasure or anyone to share it with. Sorry this is a long moan but I would appreciate any comments

Hi, Daisymarguerite--

So sorry to hear your pain. I know it hurts. I'm not an expert, but I walk this path, too. All I can do is lend a little encouragement.

Since you're apparently in the UK, there may be lots of resources available to get Carer's help, as others have suggested. That's an excellent idea.

I am in the US and my husband has Parkinson's as well. I can offer a few tips that have helped me. I'm a sole carer (no family support, unfortunately), work from home (can do less of this, each day, due to Parkinson's tolls, but I still work as I can), hubby & I have been married for 29 years and are probably more than 4 years into this, though diagnosis just came this year.

1. Read all you can about Parkinson's AND something called "Lewy Body Disease" they are related. Amazon is an excellent resource (even if you just read through the reviews for some of these books, you'll find useful tips from carers). I can recommend a couple of titles that helped me most (available immediately on Kindle, if you have one). Both are memoirs, written by other women who have trod before.

2. Part of the problem with Parkinson's is Apathy. It's part of the disease, NOT something the victim chooses. He'd be interested if he could, but that part of the brain gets suppressed. Sometimes, TV is the best friend of Parkinson's patients (and I, for one, am very grateful that Hubby can actually occasionally get engrossed in plotlines & story lines--I think it is very good therapy for keeping mind focused & interested in something "new"). He can still, at times, feel happiness.

3. He may just "look" lonely. I know this sounds weird, but Parkinson's patients sometimes get something called a "masked expression." The muscles in their faces don't express emotion as they used to. This caused a lot of misunderstandings in the beginning for us, as I found it impossible to read my husband's expressions and he always looked slightly angry (which he actually wasn't). It's an odd one, but I've gotten used to it.

4. Start a Journal. I know it sounds dumb, but you will TREMENDOUSLY speed your understanding of the disease, your situation, successes, mistakes you can avoid in future, and a wonderful new sense of self-understanding. For me, this has been absolutely PRICELESS. I just started my own journal in late March of this year (just when I was pushing hard to get hubby to accept he must see a doctor) and I already have a 75 page, single spaced document, just from natural daily writing. My own Journal has taught me more than any doctor we've seen so far (and he has some good ones, fortunately). Can't overemphasize how important this is to your own mental & emotional health through this time. You will help yourself more than you can realize. And you NEED the support. Just re-reading your own "a-ha" moments will give you courage and insight that no one else could possibly give you. Please try it; it's immensely therapeutic.

5. I know it's hard sometimes, but try to remember who your husband once was, and do your best to keep that in mind, despite the challenges. That's helped me through many a rough patch. There's an old Aesop's Fable called something like "The Hunter and the Hound." I read that when I need to : )

6. Dogs give great hugs. Great for Hubby, too. I find sometimes, my Hubby will brighten up considerably after playing with our dogs. Animal Magic.

7. An occasional lunch date with a trusted friend is priceless. I find it best to keep the Parkinson's at home (meaning I don't talk about it with my friend), so when I do get to have a sandwich with a friend, I prefer to use the time just to re-charge my own battery. I live with Parkinson's every day and sometimes, am just tired of talking about it (particularly to people who don't have any experience with it and just can't understand). I think many here know just what I mean.

8. Post Here. LOTS.

Hope some of that is helpful, daisymarguerite. I find it so helpful, myself, to know that there are such caring people here at TP and many are dealing with incredible challenges with great courage. Sometimes, that helps me keep my own perspective. But sometimes, I just have to go punch some pillows or cry : ) You just have to find a path that works for you. And believe me, you will. You will be able to do and take so much more than you think you can!

 

[Scarlett123]

A great post Willow Tree

 

[Daisymarguerite]

Hi, Daisymarguerite--

So sorry to hear your pain. I know it hurts. I'm not an expert, but I walk this path, too. All I can do is lend a little encouragement.

Since you're apparently in the UK, there may be lots of resources available to get Carer's help, as others have suggested. That's an excellent idea.

I am in the US and my husband has Parkinson's as well. I can offer a few tips that have helped me. I'm a sole carer (no family support, unfortunately), work from home (can do less of this, each day, due to Parkinson's tolls, but I still work as I can), hubby & I have been married for 29 years and are probably more than 4 years into this, though diagnosis just came this year.

1. Read all you can about Parkinson's AND something called "Lewy Body Disease" they are related. Amazon is an excellent resource (even if you just read through the reviews for some of these books, you'll find useful tips from carers). I can recommend a couple of titles that helped me most (available immediately on Kindle, if you have one). Both are memoirs, written by other women who have trod before.

2. Part of the problem with Parkinson's is Apathy. It's part of the disease, NOT something the victim chooses. He'd be interested if he could, but that part of the brain gets suppressed. Sometimes, TV is the best friend of Parkinson's patients (and I, for one, am very grateful that Hubby can actually occasionally get engrossed in plotlines & story lines--I think it is very good therapy for keeping mind focused & interested in something "new"). He can still, at times, feel happiness.

3. He may just "look" lonely. I know this sounds weird, but Parkinson's patients sometimes get something called a "masked expression." The muscles in their faces don't express emotion as they used to. This caused a lot of misunderstandings in the beginning for us, as I found it impossible to read my husband's expressions and he always looked slightly angry (which he actually wasn't). It's an odd one, but I've gotten used to it.

4. Start a Journal. I know it sounds dumb, but you will TREMENDOUSLY speed your understanding of the disease, your situation, successes, mistakes you can avoid in future, and a wonderful new sense of self-understanding. For me, this has been absolutely PRICELESS. I just started my own journal in late March of this year (just when I was pushing hard to get hubby to accept he must see a doctor) and I already have a 75 page, single spaced document, just from natural daily writing. My own Journal has taught me more than any doctor we've seen so far (and he has some good ones, fortunately). Can't overemphasize how important this is to your own mental & emotional health through this time. You will help yourself more than you can realize. And you NEED the support. Just re-reading your own "a-ha" moments will give you courage and insight that no one else could possibly give you. Please try it; it's immensely therapeutic.

5. I know it's hard sometimes, but try to remember who your husband once was, and do your best to keep that in mind, despite the challenges. That's helped me through many a rough patch. There's an old Aesop's Fable called something like "The Hunter and the Hound." I read that when I need to : )

6. Dogs give great hugs. Great for Hubby, too. I find sometimes, my Hubby will brighten up considerably after playing with our dogs. Animal Magic.

7. An occasional lunch date with a trusted friend is priceless. I find it best to keep the Parkinson's at home (meaning I don't talk about it with my friend), so when I do get to have a sandwich with a friend, I prefer to use the time just to re-charge my own battery. I live with Parkinson's every day and sometimes, am just tired of talking about it (particularly to people who don't have any experience with it and just can't understand). I think many here know just what I mean.

8. Post Here. LOTS.

Hope some of that is helpful, daisymarguerite. I find it so helpful, myself, to know that there are such caring people here at TP and many are dealing with incredible challenges with great courage. Sometimes, that helps me keep my own perspective. But sometimes, I just have to go punch some pillows or cry : ) You just have to find a path that works for you. And believe me, you will. You will be able to do and take so much more than you think you can!

Hi willow tree,
Thank you for your thoughts and ideas. I wrote you a huge long reply this morning but something has gone wrong and it hasn't posted through. Sigh! Anyway in brief it generally said thank you. It's been a day when OH's SKY tv has died ,we've both been grumpy and tired and then Sainsbury's couldn't find my house(they've delivered here loads of times) so no food. Ugh I'm going to bed .night night all xx

 

[Beetroot]

A great post Willow Tree

Hear hear. Inspiring.

I do feel for your DaisyM. It is so important that you get some "me" time alone when you know the pwd is being cared for so you haven't got half an eye on the mobile. Can your husband be left for any amount of time? I have a get up carer and a befriender from Crossroads on the same day who does three hours over lunch time, which means I can get out guilt free-ish for the best part of a day if I want to. I haven't quite managed to do it regularly yet - need to get myself better organised. The Crossroads lady is wonderful, so kind and caring. They chat and, to give them something to chat about, she has started to make notes for Mum's "About me/Life Book" using old photos to jog her memory and they have lunch together. Do they have a Crossroads service in your area? Our local one is subsidised by the council, so after a while you get the befriender for no charge, except mileage if they go out.

Have you had a carer's assessment from social services? Can they offer you anything?

 

[Scarlett123]

I sourced a Day Centre for my husband which he attended for about 4 hours a day, 6 days a week. If I hadn't had that precious time, which I used to either sleep, catch up with household chores, make phone calls, and, most importantly, meet friends for coffee, I would have burnt out and disintegrated.

You have to have some "me" time, in order to function, and whether you use it reading, resting, watching TV, meeting friends, having a massage or polishing your brass button collection , it doesn't matter.

Just as long as you have a break.