Is the beginning of the end?

[anthony551]

My wife is compos mentis enough to make our bed, get to Sainsbury's every morning and keep the kitchen tidy but she just stops there. Once the daily shop is put away she sits down in front of the TV and absorbs junk programmes until dinner time.

I can't sit through the same TV showing the same things - the same way - repeating the same script - and the same jingles everyday so I go away into the back bedroom of our small flat and play on this computer.

I feel like a lodger in my own home. If I make an omelette for lunch I'll eat it in the kitchen because the TV is still on. She comes in and dries the washing up. Then she needs me to tell her where to put each item. She is like a 5 year old. I talk to her like I would to 5 year old.

When I forgot how childlike she is and allow myself to get irritated she gets worried I don't love her anymore. So I have to become the parent figure again, reassuring her that it's alright and that I do love her.

She is 73 years old and physically very well. I spite of a diet which consists solely of tomato soup, ice cream and co-codamol (she'll steal my prescription) the doctor can't find anything wrong with her apart from a diagnosis of mild dementia. But I can tell it's much worse than that and it's getting more worse week by week.

It's our 20th wedding anniversary on 21st June and I'm wondering what to celebrate.

 

[Selinacroft]

Hi Anthony
Sorry to hear how frustrating life is getting for you at the moment. Do you ever get a chance to get away by yourself for a while apart from upstairs? Are you able to leave the house? Have you had any contact with Social Services for a carers assement or considered getting in sitters so that they can perhaps keep an eye on your wife and give you a break to do something fulfilling?

 

[LadyA]

Hi Anthony.
Firstly, I would say, hide or lock away the co-codamol! It's very addictive, and won't be doing your wife any good if she doesn't need it for pain. If she IS in pain, she needs to be assessed herself and prescribed appropriate meds.
My mother, who doesn't have Dementia, also has the TV on all day, watching those endless repeats of the same shows! They do seem to have a sort of hypnotic effect!

All you can do is your best. You can't really change the progression of the illness. If you can, introducing a bit more fibre and variety to your wife's diet would be good - maybe a sandwich to go with the soup? Other than that, the best thing you can do is go with the flow as much as is practical.

 

[lemonjuice]

Well anthony551 it is certainly the beginning of the end of your previous relationship with your wife.
Once dementia arrives relationships start to change and you will experience many 'little deaths' as one by one your wife's faculties will start to fail.

However your wife still sounds like very early stages and you probably have years together yet.

 

[Beate]

I agree about the co-codamol - lock it away so she can't get at it!

The thing is, with dementia the brain gradually slows down. What a healthy person does in a day can be far too much for a PWD, not physically, but mentally. They need shut-down time, and mindless TV will give that to them. So it's not laziness on her part, it's her condition. Try to understand that she cannot help her condition.

There is one paragraph in this article that really sums it up:
https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired
"They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them."

Please ask Social Services for a needs assessment for your wife and a carers assessment for yourself. You're entitled to one by law. They could get her into a Day Care Centre a few days a week where she would get social interaction, activities and a hot meal, and/or people who visit her at home and just sit with her - playing games or watching TV with her so you can go out.

 

[SnowWhite]

It must be horrible and quite bewildering for you Anthony. A friend of mine had an older partner who suffered a serious stroke and he became like a child again, repeating the same thing over and over and asking the same questions until she felt she was going mad. She used to say she hated hearing herself talking to him as if he were a child when he was a highly educated university lecturer.

I agree with those who mention Day centres or a sitter to give you a break. Xx

 

[Olliebeak]

Anthony - I do feel for you. I logged on tonight and yours was the first thread I saw. I was actually going to write something similar. My husband would watch TV all day everyday. It's another Saturday night and we are watching ITV3 - again - endless boring repeats. Tonight it's Endeavour and Foyles War and I know them by heart.

It's very hard to love someone who is so different to their real selves and very easy to just feel resentment of the way those of us in this position have to live. If our other halves were not ill it would be seen as unreasonable behaviour and grounds for divorce but they are ill and we are trapped.

I do get out as he is fine alone during the day and with my son calling in to give him dinner managed a night away walking with friends this week which I really enjoyed - but on the way home my heart just sank and I felt like running away.

Sometimes I wonder if there will ever be an end to it and then I feel guilty for feeling like I do.

 

[Hamster Wheel]

Oh Olliebeak, (hug) and Anthony too, at least it's my dad and I have the support from OH. We started off with Foyle then Progressed to Moviesformen As we moved into dad's house (he wouldn't move to us) felt he should be 'the guardian of the controls', but if you left the room for a second another Chanel was showing upon return! So we put a sofa bed in the spare room with a tv to make a little sitting room, (pathetic really when you consider our ages and the home we gave up). I do feel guilty sitting there rather than with him but I check in occasionally - once he starts pressing buttons only the gods know or care what he is watching.
Wish I could think of something more uplifting to add BUT you have here to unload.

 

[jenniferjean]

Hi Anthony, I'm sorry to hear how frustrating life is for you. I feel for you as a lot of what you say I am also experiencing. I'm another who is living with ITV3. My husband will help in the kitchen by drying up but I too have to tell him where everything goes. Though sometimes he puts things where he thinks they go and then I have to search for them when I need them.

 

[anthony551]

Thank you

I'd like to thank all of you who replied to my post. I knew that I'm not the only one to have to cope with a partner who is drifting away but it's a comfort to hear from you.

There's an additional problem in that I have a progressive form of multiple sclerosis and although my mind is clear my body is seizing up. My wife is my carer.

I get away to an art class once a week. My wife drives me there although I have to guide her street by street to the venue. It's the same route every week but she is always anxious about getting lost. Once there, she sits in the car for two hours until I emerge because she can't find her way home without me.

I feel so restricted as she is so clingy, apprehensive and needy. I understand why we feel guilty about being resentful but it's the truth.

I'll look after her for as long as I'm able because that's what I promised her 20 years ago and because now she needs me more than ever. No one said it'd be easy.

Regards,

Anthony

 

[dancer12]

I'd like to thank all of you who replied to my post. I knew that I'm not the only one to have to cope with a partner who is drifting away but it's a comfort to hear from you.

There's an additional problem in that I have a progressive form of multiple sclerosis and although my mind is clear my body is seizing up. My wife is my carer.

I get away to an art class once a week. My wife drives me there although I have to guide her street by street to the venue. It's the same route every week but she is always anxious about getting lost. Once there, she sits in the car for two hours until I emerge because she can't find her way home without me.

I feel so restricted as she is so clingy, apprehensive and needy. I understand why we feel guilty about being resentful but it's the truth.

I'll look after her for as long as I'm able because that's what I promised her 20 years ago and because now she needs me more than ever. No one said it'd be easy.

Regards,

Anthony

Hi Anthony551:

I just read your post, it brought so many tears to my eyes I felt I just had to respond. You & your wife are blessings to each other. I often times sit here and ask myself WHY, WHY, WHY whereas you ask yourself WHY NOT. You & your wife have made something that is almost impossible possible and made sense out of something that makes no sense at all. Good to you for taking an art course and good to your wife for driving you there.

All the best to both of you always. You both are truly an inspiration.

 

[LadyA]

Anthony, the time is coming though when you are both going to need more help, as your wife's illness progresses. Have you had a needs/Carer's assessment? I know others have found it helpful to introduce carers early, as maybe someone to help with a bit of cleaning or similar, to get the person with dementia used to and accepting of someone coming in. As time goes on, the Carer can gradually take on different tasks, like preparing meals, and helping with dressing. Just something to think about.

 

[suze]

must get breaks

Hi Anthony551 - so sorry for you as I have been slowly losing my husband over four years. He didn't really want to watch Tv much but otherwise was becoming quite detached from me. I used to go out Tuesday afternoons singing and also Friday mornings and was just going to set up Crossroads to come out and sit so I could carry on and he has gone into hospital....
We grieve for years as the loss is slow ......try to get out of the house
x

My wife is compos mentis enough to make our bed, get to Sainsbury's every morning and keep the kitchen tidy but she just stops there. Once the daily shop is put away she sits down in front of the TV and absorbs junk programmes until dinner time.

I can't sit through the same TV showing the same things - the same way - repeating the same script - and the same jingles everyday so I go away into the back bedroom of our small flat and play on this computer.

I feel like a lodger in my own home. If I make an omelette for lunch I'll eat it in the kitchen because the TV is still on. She comes in and dries the washing up. Then she needs me to tell her where to put each item. She is like a 5 year old. I talk to her like I would to 5 year old.

When I forgot how childlike she is and allow myself to get irritated she gets worried I don't love her anymore. So I have to become the parent figure again, reassuring her that it's alright and that I do love her.

She is 73 years old and physically very well. I spite of a diet which consists solely of tomato soup, ice cream and co-codamol (she'll steal my prescription) the doctor can't find anything wrong with her apart from a diagnosis of mild dementia. But I can tell it's much worse than that and it's getting more worse week by week.

It's our 20th wedding anniversary on 21st June and I'm wondering what to celebrate.

 

[WifeyLT]

Empathy

Anthony, thanks for this post - my Dad's in a declining condition at the moment but in a similar style to your wife, he is sometimes very able and other times has awful spells when he thought my mum was his mum. My mum is struggling too - I was looking for advice on whether now is the right time for an assessment - and I think it is by the responses on this thread. Mum needs cleaning help and some support; Dad is better when he's engaged somehow (other than tv and sleeping on the sofa!) but mum doesn't know what to do ... someone to come and hang out with him, someone to pop to the allotment with him ... he might initially resist but over time I think he'd assume they were an old friend. Thank you for your honesty

 

[anthony551]

Anthony, thanks for this post - my Dad's in a declining condition at the moment but in a similar style to your wife, he is sometimes very able and other times has awful spells when he thought my mum was his mum. My mum is struggling too - I was looking for advice on whether now is the right time for an assessment - and I think it is by the responses on this thread. Mum needs cleaning help and some support; Dad is better when he's engaged somehow (other than tv and sleeping on the sofa!) but mum doesn't know what to do ... someone to come and hang out with him, someone to pop to the allotment with him ... he might initially resist but over time I think he'd assume they were an old friend. Thank you for your honesty

Hi,
I would certainly ask adult social services for an assessment of his care needs. Think of your Mum, when she looked after you when you were a child. She needs someone to look after her now and that means getting care for your Dad.
Best wishes,
Anthony

 

[Christine 47]

"I feel you slipping away..." John Lennon, Losing You

Yes, I'm in a similar place though my dear husband's probably more varied in what he can do and wants to watch on TV.
Whilst our relationship has changed in recent years and I know there will be many challenges ahead, as things stand I mostly feel a tender protectiveness towards him, as if he were my small child.
Maybe you might be able to get in touch with your nurturing side to help you both along?
Also perhaps you could browse the web including this site on a tablet in the same room with her, if the TV sound could go down a bit of you could wear a headset?
Anyway, see what you could dream up to improve both your lives. Your wife is probably oblivious to your feelings and cannot help the way she is. But we spouses experience such pain and loss every day, thank goodness we can share. Good luck.

 

[John_D]

john_D

My wife is compos mentis enough to make our bed, get to Sainsbury's every morning and keep the kitchen tidy but she just stops there. Once the daily shop is put away she sits down in front of the TV and absorbs junk programmes until dinner time.

I can't sit through the same TV showing the same things - the same way - repeating the same script - and the same jingles everyday so I go away into the back bedroom of our small flat and play on this computer.

I feel like a lodger in my own home. If I make an omelette for lunch I'll eat it in the kitchen because the TV is still on. She comes in and dries the washing up. Then she needs me to tell her where to put each item. She is like a 5 year old. I talk to her like I would to 5 year old.

When I forgot how childlike she is and allow myself to get irritated she gets worried I don't love her anymore. So I have to become the parent figure again, reassuring her that it's alright and that I do love her.

She is 73 years old and physically very well. I spite of a diet which consists solely of tomato soup, ice cream and co-codamol (she'll steal my prescription) the doctor can't find anything wrong with her apart from a diagnosis of mild dementia. But I can tell it's much worse than that and it's getting more worse week by week.

It's our 20th wedding anniversary on 21st June and I'm wondering what to celebrate.

You just have to remember that she has dementia, be kind and carefull at the same time. Unlike my wife, your wife can help wipe up, even if she can't put them away, and watch tele, my wife just sits does nothing and just talks rubbish, but both of us should love our wife's, and bless the time we have had with them, because we married them for better or worse. I hope and pray that you can find the patience that you was