Solitary chicken - need advice

[Ain't Nobody Here]

Spent 3 1/2 hrs with mum today, 1 getting her up this morning and 2 1/2 this afternoon at a group for old folks (her first visit), which she seemed to enjoy. She's really not good with people so that was unexpected.

 

Came home just now to a message so long that the answering machine gave up on her, rambling about how lonely she is, how there must be a group, any group, she can go to, she can't stand sitting alone all day, in silence, staring at 4 walls.

 

I know it's not her fault, but it's so frustrating!

[Charlottechicken]

Oh no It must be incredibly hard for you.

 

So sorry, ANH, I don't have any advice to offer but feel free to vent your spleen on here.

[Ain't Nobody Here]

Thanks . Forgot to add that she also had an hour long visit from a very kind friend of mine, who visits her a couple of times a week. So 4 1/2 hours company today but all forgotten .

[Charlottechicken]

Wow, I can't imagine what that must feel like for her. You are being very patient with her, again. Is there such a thing as a dementia carer's support group?

[gavclojak]

I am so sorry you and so many others are going through this at the moment.

 

My lovely Nanna Amy had dementia, it's beyond horrific seeing loved ones going thorough this. With my nan it came to the point we had to find a nursing home and after the inevitable guilt and sadness, I have to say it was the best decision we could have made for her. She had firsts class care, the home had a full daytime entertainment programme and she was constantly engaged and entertained.

They had a multi-sensory room and she seemed to enjoy spending time in there and also a multi faith room and lots of other things including gardening activities.

 

I hope you never have to make that decision but please rest assured there really are good nursing homes out there.

[The Dogmother]

I'm so sorry to hear that Vicki as you know, my mother has advanced dementia and it's a cruel condition.

 

Try Alzheimer's UK if you haven't already; they are very supportive, and run lots of clubs, support groups and coffee mornings for both sufferers and their carers.Does she have carers and support workers coming in?

 

It has been a long hard slog with my mother, and a couple of visits to the hospital after repeated strokes, but she's back at home now, where she gets better care. My father has a rota of really lovely carers coming in during the day to deal with the elements of her day to day routine that he can no longer manage on his own.

 

There are many stages of dementia; all bring different challenges, and none of them easy.

 

Please feel free to get in touch if you need to chat - it isn't at all easy on the family of sufferers, and you shoudl make sure that you have support.

[JellyBean2605]

As its only been the once she's been there it won't have made the impact you were expecting, if it becomes a regular thing it's more likely she'll be able to recall it. My gran hasn't got dementia but her short term memory is appalling, she remembers my weekly visits but if family make a spontaneous visit she'll forget. Often I've arrived and she's been in tears saying how lonely she is, I'll sit and remind her of the visits by family and she'll cheer up. One thing that really helps her mood is letters from my siblings who live abroad, she keeps them and reads them over and over again (although I keep having to remind them to write )

You are doing the best you can, it's difficult but at least you can take comfort that her physical wellbeing is being cared for and her emotional wellbeing will go up and down but ultimately she is loved and not abandoned. That's all I can do.

[patsylabrador]

I was totally ignorant of how awful dementia could be for family before your posts.

Obviously as a WPC I dealt with the fallout of this condition but I was removed from it.

I've only known my lovely Gran suffer from it, she did have difficult moments but generally her world was marvelous. She and Grandad had a glorious love for each other and lived fulsomely. But he died. Their happiest times were their holidays in the Greek isles and that is where she went when her mind left us. She could be a bit embarrassing in public towards the end but I prefer to remember the very glamorous lady who tried to make me more sophisticated- bit of a fail there.

She lived in a very caring and professional home for some years and I think she was happy there when her mind was in England.

Best wishes for you with your mum.

[Ain't Nobody Here]

Thanks, everyone, it's nice to have such friendly, supportive comments .

 

The only real symptom of her dementia is chronic short term memory loss - she's normally pretty lucid and that's part of the problem, she knows that she can't remember anything.

 

I'm very lucky that she has 2 fantastic private carers and 2 care agencies so she has 4 visits a day and normally I only have to do 2 hrs on a Saturday and a quick visit for a cup of tea every few days but the main carer has been on holiday for 5 weeks so I've been covering for her on my days off. I usually get a few phone calls every day but they're not a problem.

 

Sadly, because she has a very difficult personality and doesn't really get on with people, clubs and groups are tricky. I only tried one today because she's been struggling with her favourite carer being away. I'm not sure she'll agree to go again.

 

She has no friends at all and her neighbours don't have anything to do with her. We don't have any family so it all falls to me (my brother visits for an hour or two once in a blue moon but I'd rather he stayed away completely ). At the moment we're just trying to keep her at home as she'd absolutely hate being in a nursing home (and they probably wouldn't like her either, she can be pretty difficult!).

 

The only positive is that she now seems to appreciate that I'm around and is mostly very nice to me (which most of you will know makes a change!).

[Plum]

But you did great ANH you gave her a few hours of happiness and that's what she's saying when spoke on the answer phone. With dementia you don't look at what they say but the meaning behind it. At this stage I agree with the others it would probably really help to join a dementia careers group.

 

Some dementia homes can be very good and understanding of the behaviour and communication. Meeting others in your situation would help find them.

[The Dogmother]

I totally agree with Plum. The stage your mother is at is one of the most distressing as she is still conscious that there's something amiss, and will be defensive/aggressive in her denial; I found that to be the saddest stage.

 

My mother is no longer aware of very much, her communication is very limited, she is (for the most part) doubly incontinent and her movements are very restricted. Considering that she was a vibrant, independent woman who lived life to the full, and coached tennis in her prime, it is very sad, but we just have to deal with what's in front of us, and support my father in his care for her.

[PixieDust]

I can completely sympathise. I cared for my mum for 12 years after she started having TIA's which caused larger strokes and dementia.

 

It's incredibly tough. And it'll get tougher. Try to make sure you can get her involved with people before she is too bad to get involved. My mum wouldn't go anywhere and it wasn't until her big stroke and she could no longer walk that she was taken to a day centre and started enjoying herself.

 

Please get in touch with social services, your local carers group and Carers UK if you haven't already. You need support. If you want to chat please message me. I completely understand. Always make time for you too. Dealing with dementia sufferers, be it a few hours a week or full on care as I gave, eats into everything. I suffered so much stress I ended up getting ill and having to stop caring. I came to live with my OH but was still ill. I eventually was diagnosed last year with severe under active thyroid with Hashimoto's Disease.

 

So don't be afraid to ask for and take all the help you can for your mum.

 

It's a cruel disease which means you end up morning the person you lost long before they die.

 

Sorry not had much sleep so might not make much sense, but offering virtual hugs as I know how you feel.

[gavclojak]

I totally agree with Plum. The stage your mother is at is one of the most distressing as she is still conscious that there's something amiss, and will be defensive/aggressive in her denial; I found that to be the saddest stage.

 

My mother is no longer aware of very much, her communication is very limited, she is (for the most part) doubly incontinent

 

Your right DM that was the worst part, she knew she was forgetting things and it scared her. Thank goodness my grandad passed a few years before so he didn't have to see the decline in her.

I have to say after my nan passed this stage and for her it didn't last long she had a very happy fulfilled last few years. She danced, sang and thoroughly enjoyed being the centre of attention without the constraints of social etiquette

Edited September 26, 2014 by Guest

[LolaLayla]

How upsetting for you Having worked with people with dementia not everyone experiences the same problems or with the same degree of severity. I depends on the type of dementia and what part of the brain is involved. In your mum's case I would reinforce that she went to the group and how much she enjoyed it. It may be worth organising either through carers or the SW dept for her to get a regular place in a day care setting. It provides structure to the week and stimulation. My mum at first refused to go ("what will people say") but latterly was requesting more days as she loved it so much. I would also set up a diary/book for her where you or visitors can fill in what has happened during the day. It should always be in the same place and hopefully she can then look at it to jog her memory as to what she has been doing that day. My mum had one and it went to day care with her. They filled in what they had done activity wise and what she had for lunch. It was good because when I phoned her she could refer to it and it would give us something to talk about. Also it led onto her remembering conversations there etc.

Coping with a person suffering from dementia is very frustrating. I remember working in a day hospital many years ago on Christmas Eve. We had prepared for weeks, making lots of lovely sweets and goodies. On the day the patients had a 3 course Christmas lunch, party with sweets etc and then a cooked tea. The bus then took the patients home. Shortly after we received a phone call from a relative saying that her mum said she had had nothing to eat all day I am sure she truly believed she had had nothing but this day in particular had been wall to wall food. We were able to reassure the relative of the situation and all was well.

I am glad she is happy for your help.

[The Dogmother]

On the subject of eating, my mother is now getting to the stage where she doesn't want to eat - Pops has some of the food replacement drinks for her, but I wonder if she will need tube feeding soon.

 

My frustration is not being able to help as much as I'd like; I live an hour and a half away and need (as a single parent) to work full time. I do get down there at weekends when I can, and enjoy spending time with them.

[Chickendoodle]

My Dad had Parkinson's related dementia and we went through some awful times. I was going to suggest a diary but thought it might be more upsetting for your Mum to see how much she was forgetting?

I saw an item on TV revently about Alzheimers and they showed the brain of a "normal" person and one of a dementia suffer. The brain of the dementia sufferer was considerably smaller showing that bits of it actually die off. I hadn't known this and it made me realise that it was no good trying to stimulate the brain to remember when it wasn't there any more! You have to just go along with whatever stage your loved one is at and cope as best you can.

[The Dogmother]

That information about the brain dying was one of the key things which helped my father to come to terms with my mother's dementia and to work with her rather than being frustrated with what she couldn't do.... I showed him some of her brain scans.

[bettyhen]

Dementia is the most hideous disease.

My mum has it (is now entering the final stages)... and has lived with us for the last 4, very difficult years. She has gone from being someone who always looked after herself , and took a lot of pride in her appearance, to someone who is mostly an angry frustrated toddler in her behaviour , who has a major tantrums about being washed .

I have watched her personality slipping away, and wouldn`t wish it on anyone.

Thank goodness for dogs, cats and of course chickens..... she still enjoys having the animals around... and they keep me sane !! (well kind of....)

I sympathise Anh... and all you other forum members who have relatives and friends with it. I think that it`s good to know that you`re not the only one dealing with it !!

[Ain't Nobody Here]

Your poor mum, DM, it must be awful for everyone .

 

Today mum remembered going to the group but said they were all "batty old people" and it's reinforced that she would hate going into a home . They weren't all batty and at least they chatted with each other which is more than she did. She just doesn't like group situations or talking to people she doesn't know, never has, and has said she won't go again.

 

Supposed to be going to another group to try it out today but not sure it would be a good idea. May be too much in one week. In any case things will improve once the carer gets back next Friday.

 

I'm in a much better situation than most family carers, I think, and it's only got me down a bit now because I've been seeing so much more of her for the last month.

 

Thank you for all your support .

[The Dogmother]

It is bound to get to you Vicki - that's only natural just take all the support you can get.

 

Our aim is to keep mummy at home for as long as possible; my father said to me the other day "it's sad that her heart is so strong"... he was in tears and juts hoped that when they time comes, she will have a dignified and peaceful end.

[Ain't Nobody Here]

Thanks DM. Your poor dad, it must be heartbreaking for him .

[PixieDust]

Echo what Dogmother says.

 

I kept mum at home as long as possible. The decision for her to go into a home was tough but she was well known to them as she went 3 days a week for the day centre and would stay for respite. I was incredibly lucky that someone pointed out this home. Such a small turn over of staff and people remain their for years and not a matter of months like some homes.

 

The hardest part is when they are partly or mostly lucid. Because they know and that must be terrifying. Mum still shows glimmers of lucidity but I know she's happy and well cared for.

 

Try to find the plus points. I found it very helpful to learn to laugh about stuff, for example her telling me mice came out at night with clogs on to wake her. If I hadn't I think I would have collapsed years ago.

 

You seem to have a lot of support here. Don't feel bad for getting angry and frustrated. You are only human and that's how we humans react to things which we don't fully understand.

[Groovychook]

So sorry to hear that you're having a hard time with your Mum ANH. It must be so difficult for you and incredibly frustrating.

Sorry to hear about your Mum too DM. So sad for your Dad to come to terms with but I was moved to read about you helping him by showing him her brain scans. It's hard to witness someone you love changing so dramatically.

 

Dementia is such a cruel disease

[Alis girls]

It probably wont stop the phone calls but "singing for the brain" if theres a local one near you has been found to stimulate Dementia pts. Also internet cafes are good for support for you. Its difficult for you but bear in mind she will have forgotten shes called you after doing so - sad but true. You are a great duaghter and support to her. Good luck -Ali x