• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Wellbeing discussion - checking in with each other and sharing practical advice

White Rose

Registered User
Nov 4, 2018
357
Hi, I’ve been on the waiting list for counselling now for eleven months, all thanks to the cutbacks and I’ve already asked for a carers assessment, at the moment she’s down as my carer so that will need to change. I’m seeing my social worker this afternoon so will bring everything up then. I just can’t believe that they only gave me 15 hours a week for her, and one of those days she likes to go visit her 94 year old mum who lives in Doncaster so that takes up seven hours, I only just recently got a new social worker who was from a caring environment and she’s battled to get those hours increased.
One thing now is she’s started to soil herself and just not understanding where it’s come from even stating that someone’s put it there. I’m worried that because of the stroke I’ve had, I’ve only got the use of one arm so there’s no way I’ll be able to change a pad so that’s worrying me also, do you think that they’ll say she has to go into a home earlier because of it? Oh I just don’t know. I’m in a wheelchair having had to have my leg amputated in 2009 it was exactly a year later I had my stroke, both were avoidable and both I sued the hospital trust over. They admitted 38 counts of negligence the day before the court case @nd I was awarded considerable damages to make sure I’m cared for the rest of my life. That’s what makes the whole situation so heartbreaking she’s getting carers allowance for me when it’s I that should be getting it for her. I’ll also speak to my social worker today regarding respite care for me but I’ll have to take my carer along as there’s things physically that I just cannot do.
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Hi @Rencat it seems like you have a lot more complications than most people have to deal with. I'm not in a position to give any advice but you mention a care home for your wife - is that something you would like to happen? Would that make your life easier or would you miss her to much - it's a difficult decision. Are Social Services providing any help for you? Someone posted on the site about independent social workers - maybe something to check on, also Admiral Nurses, if there is one in your area. You'll get it sorted - just so stressful that it all takes so much time and energy. Take care of yourself.
 

JennSymo542

Registered User
Nov 6, 2017
12
This is a really nice thing to do.

Like most people here, I experience ups and downs. My father has been severely poorly for two years now with no chance of things improving. It's like treading water in a way. I know he is cared for and looked after and I am lucky that I only live about 15minutes away so I visit him almost daily. I wish I could visit every day but I feel like I need an evening to myself every once in a while and I feel guilty about feeling like this because I don't want him to be lowly and I don't want to regret not spending more time with him.

I sometimes feel like I am on my own; my older brother decided he didn't want to involve himself with my father's care and that hurt me greatly, and my other older brother (the middle child) can only visit him once a month owing to his work commitments. I just nod along and carry on as usual but sometimes I would like to ask them both to pull their socks up and help me. Just help me cope a bit more emotionally and physically. Our mother died a couple of years ago so everything rests on me now.

I am 32 and, selfishly, I feel like it's unfair that I have to do this at this age. I should be enjoying meeting up with the folks at the weekend, just having a coffee and a catch-up like other people my age. I feel like I am grieving for what could have been.
 

Helly68

Registered User
Mar 12, 2018
549
I am not doing so well at the moment.
I am fortunate, in that my mother, who has late stage dementia is in a very nice care home, but at the moment she is hell-bent on assaulting the staff. I am frightened of where she may end up if the current drug therapy isn't successful. I love her, but she's very strong and determined and any personal care or medication giving, the lovely staff are the enemy, and she fights them every day. I dread the phone ringing.
My father, very independent and living in his own home alone is starting to behave very oddly. He's always been eccentric but I worry, although he has no cognitive diagnosis, what the future holds. He strenuously resists any kind of support, but will phone me in a crisis.
I work for the NHS and have been told that my job is "at risk" in a recent consultation. No one knows what this means - redeployment, redundancy etc and it is driving me up the wall trying to be at work, carrying on as if nothing had happened. I also recently lost the Enhanced part of my DLA award (transferred to PIP), so trying to sort out buying a car and wondering if I have the strength to appeal.
I am not dealing very well with any of this. Apologies for whining, I know others have far greater problems.
 

charlie67

Registered User
Nov 1, 2015
2
The GP said that if it wasn't for our care Dad would have "gone" a long time ago.
Yes I think the personal care that a family provides can make all the difference.

My Dad is 85 in March and was diagnosed in 2015 with fronto-temporal dementia of Alzheimer's disease. I think we caught it early, as he can still do alot of things himself. I live with Mum and Dad, so that I can assist with care. Fortunately, the house is big enough, that we are not on top of each other and I have my own section. I have my own company and work from home, with flexible hours, which helps. Also having the two of us to care for him help, because we can take time outs when the stress of it gets too much.I think what has helped us enormously. I also have Mum forgetting things, but hopefully that is just old age.

Dad is very healthy and fit, it is just his memory unfortunately. I think his health has had a big impact and helped him to slow the decline process. We are treasuring every moment, but it is devastating for my Mum to see, the love of her life disappear into another person.

My siblings don't really understand, so no help there. In fact they are slightly jealous that I am living with Mum and Dad. It's not like I am not paying my own way etc. Go figure. But I am getting the opportunity to have special time with them and enabling them not having to move into a care home.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
This is a really nice thing to do.

Like most people here, I experience ups and downs. My father has been severely poorly for two years now with no chance of things improving. It's like treading water in a way. I know he is cared for and looked after and I am lucky that I only live about 15minutes away so I visit him almost daily. I wish I could visit every day but I feel like I need an evening to myself every once in a while and I feel guilty about feeling like this because I don't want him to be lowly and I don't want to regret not spending more time with him.

I sometimes feel like I am on my own; my older brother decided he didn't want to involve himself with my father's care and that hurt me greatly, and my other older brother (the middle child) can only visit him once a month owing to his work commitments. I just nod along and carry on as usual but sometimes I would like to ask them both to pull their socks up and help me. Just help me cope a bit more emotionally and physically. Our mother died a couple of years ago so everything rests on me now.

I am 32 and, selfishly, I feel like it's unfair that I have to do this at this age. I should be enjoying meeting up with the folks at the weekend, just having a coffee and a catch-up like other people my age. I feel like I am grieving for what could have been.
Grieving for what could have been is understandable , especially when you can’t change the outcome. xx
 

Jale

Registered User
Jul 9, 2018
396
From reading the many posts here I think I/we as a family have got away fairly lightly - if there is such a thing with this illness. Mum has been in a nursing home now for 16 months, and she went into home after another hospital stay left her totally immobile, so we didn't have to make the decision that so many people are facing about when is the right time for a loved one to move into a home. That should have made things easier for me because I was the one who promised Mum that she wouldn't have to go into a home when she was at a very low point of recovering from skin cancer and the loss of her husband who she had been married to for 63 years. I'm glad that my Dad isn't here to see Mum now, it would have broken his heart to see how much she has changed in her personality and physically.

I find it difficult to walk away from her in the home, so time our visits to just before lunch time and on reasonably good days I ask myself what on earth is she doing in the home, but then I see her when she is shouting and lashing out at carers and I know that she is in the best place. I just feel so sad that her life has come to this and I would love to be able to give her a hug, or maybe it's me that needs the hug, but I know she would not welcome it so just have to get on with it, but I still wish that she could go to sleep and peacefully be reunited with my Dad
 

Stayingalive

Registered User
Nov 24, 2019
23
I am sad because my husband of 51 years is leaving me by inches day after day. I've had counselling for depression which helped a great deal.

The thing that no-one seems to talk about on these pages is how boring it is being a carer.

Having had a very busy life with 4 children, always working full-time, and lots of activities like amateur dramatics and being a Borough and County Councillor (more dramatics!), life is now reduced to a part-time job that I'm clinging onto for dear life as it gets me out of the house and mixing with 'normal' people.

When I come home it's to a barrage of paranoia (someone's been in the house and stolen his clothes), a demand to be taken to the local shops even though there's nothing we need, watching him fall asleep in front of the TV and wake up confused and aggressive.

We went to a dinner recently with old friends, a group of over 35 people, and I was having a good time, but before the main course my husband insisted on leaving as it was 'too much' for him.

When we eat out on our own, we used to find it strange that other couples sat in silence when we always had so much to say to each other. Now he says very little, and I have to work hard to avoid us sitting there in silence. He occasionally starts a sentence but doesn't get far with it and I have to try and guess where it was going.

He can't manage the garden any longer and tries to do a bit of DIY which usually ends with him trying to stick things together with Savlon or Ibruprofen gel and getting very angry with me when I try to understand why it won't work.

Yesterday he moved a lot of stuff I had put in a spare bedroom to take to the charity shop, but denied having done so. Took me ages to find some of the things in the most obscure hiding places, some things haven't turned up yet.

It's like living with a toddler in an adult body, but the difference is that toddlers learn and develop but people with dementia just get worse. Sounds really trivial, but I tell him daily not to put stuff in the bins outside, and every day I go out and find recycling in the garden waste bin, unrecyclable waste in the recycling bin. Every bin day I have to don rubber gloves, empty all the bins and reallocate the waste.

When I see my children and other people I have to bite my tongue not to moan about him, they don't want to hear it and it's occasionally funny but usually pretty dull. I don't want to be that person who talks about nothing else (like so many older people just talk about their ailments), but as we have next to no social life these days there are limits to what I can talk about and what I'm looking forward to. So I try to be a good listener these days, and if people ask about my husband I keep my answers brief and light, because I don't want to be a person that everyone avoids because I'm just a moaning minnie.

That's what's helpful about these forums - you are allowed to moan and everyone else understand the need to vent.
 

Donkeyshere

Registered User
May 25, 2016
461
channel islands
I am sad because my husband of 51 years is leaving me by inches day after day. I've had counselling for depression which helped a great deal.

The thing that no-one seems to talk about on these pages is how boring it is being a carer.

Having had a very busy life with 4 children, always working full-time, and lots of activities like amateur dramatics and being a Borough and County Councillor (more dramatics!), life is now reduced to a part-time job that I'm clinging onto for dear life as it gets me out of the house and mixing with 'normal' people.

When I come home it's to a barrage of paranoia (someone's been in the house and stolen his clothes), a demand to be taken to the local shops even though there's nothing we need, watching him fall asleep in front of the TV and wake up confused and aggressive.

We went to a dinner recently with old friends, a group of over 35 people, and I was having a good time, but before the main course my husband insisted on leaving as it was 'too much' for him.

When we eat out on our own, we used to find it strange that other couples sat in silence when we always had so much to say to each other. Now he says very little, and I have to work hard to avoid us sitting there in silence. He occasionally starts a sentence but doesn't get far with it and I have to try and guess where it was going.

He can't manage the garden any longer and tries to do a bit of DIY which usually ends with him trying to stick things together with Savlon or Ibruprofen gel and getting very angry with me when I try to understand why it won't work.

Yesterday he moved a lot of stuff I had put in a spare bedroom to take to the charity shop, but denied having done so. Took me ages to find some of the things in the most obscure hiding places, some things haven't turned up yet.

It's like living with a toddler in an adult body, but the difference is that toddlers learn and develop but people with dementia just get worse. Sounds really trivial, but I tell him daily not to put stuff in the bins outside, and every day I go out and find recycling in the garden waste bin, unrecyclable waste in the recycling bin. Every bin day I have to don rubber gloves, empty all the bins and reallocate the waste.

When I see my children and other people I have to bite my tongue not to moan about him, they don't want to hear it and it's occasionally funny but usually pretty dull. I don't want to be that person who talks about nothing else (like so many older people just talk about their ailments), but as we have next to no social life these days there are limits to what I can talk about and what I'm looking forward to. So I try to be a good listener these days, and if people ask about my husband I keep my answers brief and light, because I don't want to be a person that everyone avoids because I'm just a moaning minnie.

That's what's helpful about these forums - you are allowed to moan and everyone else understand the need to vent.
I know exactly how you feel being a moaning minnie, I think its because no matter what our world becomes a world revolving around dementia, it takes over and becomes your every other thought - my OH and I went for a quick shop the other day and we both found ourselves moaning to someone we both know - we came back home and he said "why do I feel the need to let it all out to other people? They are not in our shoes". I find myself apologising to work colleagues about moaning - but the OH stays at home and does not get a "break" like I do in the day, we just switch roles when I get home. I become the carer, he gets a break for a few hours. Then it all starts again - moan away I say on TP we are all in the same shoes!
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,667
Merseyside
Yes I think the personal care that a family provides can make all the difference.

My Dad is 85 in March and was diagnosed in 2015 with fronto-temporal dementia of Alzheimer's disease. I think we caught it early, as he can still do alot of things himself. I live with Mum and Dad, so that I can assist with care. Fortunately, the house is big enough, that we are not on top of each other and I have my own section. I have my own company and work from home, with flexible hours, which helps. Also having the two of us to care for him help, because we can take time outs when the stress of it gets too much.I think what has helped us enormously. I also have Mum forgetting things, but hopefully that is just old age.

Dad is very healthy and fit, it is just his memory unfortunately. I think his health has had a big impact and helped him to slow the decline process. We are treasuring every moment, but it is devastating for my Mum to see, the love of her life disappear into another person.

My siblings don't really understand, so no help there. In fact they are slightly jealous that I am living with Mum and Dad. It's not like I am not paying my own way etc. Go figure. But I am getting the opportunity to have special time with them and enabling them not having to move into a care home.
Welcome to DTP @charlie67
 

northerngirl

New member
Aug 10, 2018
6
I’ve been a member since 2013 but not sure why I need to post 10 times to avoid spam??
Hello Bella Cleo
I too cannot understand ‘need 10 posts’ I’ll be interested to see if this reply to you comes up, will this be the first of my 10? Confused!
 

Lawson58

Registered User
Aug 1, 2014
1,991
Victoria, Australia
My husband is well into his sixth year since his diagnosis of Alzheimer's. He suffered a cardiac arrest over 6 years ago and in many ways his heart condition and several other health issues along the way are more of a concern than his AD.

He is a high functioning individual who still is relatively independent. He is passionate about playing bridge and plays several times a week. I think that detested phrase 'Living well with dementia' applies to him as he is still out and about enjoying himself and lives free of responsibility. The biggest hindrance to his lifestyle is his inability to drive.

His disease has destroyed my life. Every day is 'Ground Hog Day'. I get up in the morning because I have to.
I have time to myself. For what? I belong to various volunteer groups which I love but they do not replace what I used to love to do. I was an addicted globe trotter and lived abroad for a number of years. Now I have been hobbled. Maybe if there was love left between us I might feel differently but I do what I do only because of an over developed sense of responsibility.

He is happy. I feel a sense of resignation and numbness. I just wait day after day for whatever is going to be.
 

White Rose

Registered User
Nov 4, 2018
357
My husband is well into his sixth year since his diagnosis of Alzheimer's. He suffered a cardiac arrest over 6 years ago and in many ways his heart condition and several other health issues along the way are more of a concern than his AD.

He is a high functioning individual who still is relatively independent. He is passionate about playing bridge and plays several times a week. I think that detested phrase 'Living well with dementia' applies to him as he is still out and about enjoying himself and lives free of responsibility. The biggest hindrance to his lifestyle is his inability to drive.

His disease has destroyed my life. Every day is 'Ground Hog Day'. I get up in the morning because I have to.
I have time to myself. For what? I belong to various volunteer groups which I love but they do not replace what I used to love to do. I was an addicted globe trotter and lived abroad for a number of years. Now I have been hobbled. Maybe if there was love left between us I might feel differently but I do what I do only because of an over developed sense of responsibility.

He is happy. I feel a sense of resignation and numbness. I just wait day after day for whatever is going to be.
I feel for you @Lawson58 as I fellow globe trotter I am similarly hobbled. My partner is not a high functioning sufferer though and there will come a time when he has to go into a care home so I wait for that time when I can travel again. Can you get a week or two of respite to get away?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,363
Bristol
Hello Bella Cleo
I too cannot understand ‘need 10 posts’ I’ll be interested to see if this reply to you comes up, will this be the first of my 10? Confused!
You only need to post 10 times before you can post links @northerngirl and @Bella Cleo. Otherwise you can post as often or as infrequesntly as you want to or need to.
If you click on the "contact us" box next to the "log out" box admin will explain the full reasons, but we do get a few spammers trying to sell products or services and I think that is reason behind it.
 

Wifenotcarer

Registered User
Mar 11, 2018
267
Central Scotland
This time last year I suffered Carer Breakdown, which led to a two week emergency respite for OH followed by morning and evening carers visits. I was determined to get him into the Care Home in our village but due to administrative mix-ups it was the end of July before he was admitted there. How I found the strength to carry on with 24/7 care for those 6 months is a mystery - probably I did it because there was no other choice and I could faintly see some faint light at the end of the tunnel.
Fast forward to October, when I fell and broke my humerus. By that time OH was well settled in the Care Home and I was so grateful that it was just up the road so that I could walk there to visit him, as I could not drive. At Christmas we were able to bring him 'home' for a few hours and he returned to CH happily for his Christmas Dinner.
So why now have I plunged into the deepest depression? My arm is healing well, though I have now to be tested for Osteoporosis. At the same time my sister was recalled after breast screening and has had a lump removed and is now facing 3 weeks of daily radiotherapy 40 miles away. I can drive, but am terrified to go more that a few miles and can't face driving in the dark. I am convinced that I have the signs of early dementia, forgetting to lock doors, leaving an empty oven on, have been frozen out of both bank accounts for entering incorrect Passwords, have to check the computer and calendar to find out what day it is. turned up at the Doctor's at the right time but 24 hours too early. The list goes on.
I wonder if it is the time of year that is affecting me, or perhaps this living alone (some days I speak to no-one) that gives me too much time to think and worry?
 

canary

Registered User
Feb 25, 2014
11,368
South coast
Stress can do things like that to you @Wifenotcarer . I guess you have had to hold it all in for months and months and now it is coming out. I reached carer breakdown last October and am on antidepressants - I do find they help, but Im back to the old merry-go-round.
 

Yardman

Registered User
Dec 14, 2019
18
Morning, Iam sitting in the lounge of my wife's Care Home with other residents who spend much of their time sleeping. The nurses are getting her ready in her room prior to lunch.
How do I feel? Saddened and sometimes feeling despair especially late evening and in the night. It worries me that when Iam not with my wife that I have had to put her needs and welfare in the hands of others. She has been in here for 3 weeks now self funded at this stage. Has the Guilt phase past? To a certain extent, but leaving your loved one who I have been married to for 50 years is heart wrenching. How do I deal with the daily request by her to come home with me or when I come home!! I had a period before Christmas when I nearly cracked. Iam 75 and Iam unable to care for her at home, even with a Care package. As others have said on other forums. Iam lonely at this time, although Iam working to fill the void. Is it a grieving phase? Is it like being a widower? Yardman
 

kindred

Registered User
Apr 8, 2018
2,341
This time last year I suffered Carer Breakdown, which led to a two week emergency respite for OH followed by morning and evening carers visits. I was determined to get him into the Care Home in our village but due to administrative mix-ups it was the end of July before he was admitted there. How I found the strength to carry on with 24/7 care for those 6 months is a mystery - probably I did it because there was no other choice and I could faintly see some faint light at the end of the tunnel.
Fast forward to October, when I fell and broke my humerus. By that time OH was well settled in the Care Home and I was so grateful that it was just up the road so that I could walk there to visit him, as I could not drive. At Christmas we were able to bring him 'home' for a few hours and he returned to CH happily for his Christmas Dinner.
So why now have I plunged into the deepest depression? My arm is healing well, though I have now to be tested for Osteoporosis. At the same time my sister was recalled after breast screening and has had a lump removed and is now facing 3 weeks of daily radiotherapy 40 miles away. I can drive, but am terrified to go more that a few miles and can't face driving in the dark. I am convinced that I have the signs of early dementia, forgetting to lock doors, leaving an empty oven on, have been frozen out of both bank accounts for entering incorrect Passwords, have to check the computer and calendar to find out what day it is. turned up at the Doctor's at the right time but 24 hours too early. The list goes on.
I wonder if it is the time of year that is affecting me, or perhaps this living alone (some days I speak to no-one) that gives me too much time to think and worry?
 

kindred

Registered User
Apr 8, 2018
2,341
You have had a series of shocks, mental and physical. Plus you have cared beyond the point where you thought you could do no more, and broke. Shock and anxiety will do this, please believe me. As for not driving in the dark and only able to go a few miles, I am still suffering from this even though my beloved husband died six months ago. Four years of never going far in case I needed to get back quickly, and when I did get home there was always severe damage to the house (radiator pulled off wall, holes in wall, electrics tied into a bow, stuff like that) conditioned me to the habit of fear of venturing far even for necessities. Please believe me, you have done an incredible job and slowly you will be able to relax. This is reaction to shock. Shock and trauma affect memory.
warmest, Kindred.
 

Wifenotcarer

Registered User
Mar 11, 2018
267
Central Scotland
You have had a series of shocks, mental and physical. Plus you have cared beyond the point where you thought you could do no more, and broke. Shock and anxiety will do this, please believe me. As for not driving in the dark and only able to go a few miles, I am still suffering from this even though my beloved husband died six months ago. Four years of never going far in case I needed to get back quickly, and when I did get home there was always severe damage to the house (radiator pulled off wall, holes in wall, electrics tied into a bow, stuff like that) conditioned me to the habit of fear of venturing far even for necessities. Please believe me, you have done an incredible job and slowly you will be able to relax. This is reaction to shock. Shock and trauma affect memory.
warmest, Kindred.
Thank you Kindred. This is what I am hoping, that this current state of helplessness/hopelessness and confusion will also pass and I will have my wits about me again.