Feeling hopeless

[Bettysue]

I’ve posted similarly before but I am very much feeling that I live in a bizarre vacuum where every day is spent on the same treadmill.My partner can no longer communicate or understand me. Even simple instructions which are the same every day are lost on him. Things like…take off your socks,go into the shower,put on your pyjamas seem to mean little. I feel like a sergeant major constantly telling him what to do or not to do. His day consists of getting up mid morning,perhaps a short dog walk,lunch, sleeping all afternoon then he stares mindlessly at the tv. I’m sure nothing registers. There is no conversation and no interest in very much. I think the world is very confusing to him. There is a very blank look in his eyes. I’m at a loss to know how to stimulate him. If anyone comes in he just falls asleep. It all feels so hopeless. This is now coupled with increasing episodes of double incontinence. On Monday he had 3 showers and last week on return from day care it was a case of all clothing in the bin,beyond washing.
I do have day care twice a week for him and a sitter one afternoon for which I’m grateful but it does not mitigate the feelings of despair and loneliness. I feel that I care for him out of a sense of duty but resentment is mounting and it definitely erupts at times. Even doing anything for myself in the free time I have is becoming more of an effort. I just feel so fed up with it all. I wonder if it is reaching the stage where he might actually benefit from 24 hour care. His needs are met physically but emotionally I have no more to give. I go through the motions because right now there is no alternative.

 

[Pusskins]

I’ve posted similarly before but I am very much feeling that I live in a bizarre vacuum where every day is spent on the same treadmill.My partner can no longer communicate or understand me. Even simple instructions which are the same every day are lost on him. Things like…take off your socks,go into the shower,put on your pyjamas seem to mean little. I feel like a sergeant major constantly telling him what to do or not to do. His day consists of getting up mid morning,perhaps a short dog walk,lunch, sleeping all afternoon then he stares mindlessly at the tv. I’m sure nothing registers. There is no conversation and no interest in very much. I think the world is very confusing to him. There is a very blank look in his eyes. I’m at a loss to know how to stimulate him. If anyone comes in he just falls asleep. It all feels so hopeless. This is now coupled with increasing episodes of double incontinence. On Monday he had 3 showers and last week on return from day care it was a case of all clothing in the bin,beyond washing.
I do have day care twice a week for him and a sitter one afternoon for which I’m grateful but it does not mitigate the feelings of despair and loneliness. I feel that I care for him out of a sense of duty but resentment is mounting and it definitely erupts at times. Even doing anything for myself in the free time I have is becoming more of an effort. I just feel so fed up with it all. I wonder if it is reaching the stage where he might actually benefit from 24 hour care. His needs are met physically but emotionally I have no more to give. I go through the motions because right now there is no alternative.

@Bettysue I feel for you and know exactly what you mean and how you feel. MH was exactly the same. Although I wanted to care for him at home, eventually (only after about 18 months) I had to place him in care. He is doing so much better there, although his basic condition hasn't improved. In fact he's going downhill slowly, but that's the nature of the disease. I hate it. You do have to think about yourself also though. I wasn't all that well when MH was at home and I frequently lashed out at him. Still am not the greatest so he's in the best place.

 

[canary]

Hi @Bettysue
Caring for someone with dementia is a lonely and isolating business. I too care for my OH mostly out of duty.

Would your husband be self-funded? If you have the funds to pay for a care home you can pretty much decide for yourself whether your husband should move into a care home, but if you would need help with funding (if he has less than £24,000 in savings) then you would have to get Social Services to agree that he needs it. Unfortunately, SS look at whether their physical needs are being met, very rarely whether their emotional needs are and generally do not consider the carers needs at all (unless they can no longer meet the person with dementias physical needs).

I wonder whether you have clinical depression? It is very common for carers to develop this (not surprisingly, really). Perhaps a chat with your GP might help. A course of antidepressants might be beneficial. Could you increase the number of days that he attends day care? Perhaps a week or two in respite might help.

 

[jennifer1967]

i was going to say that it sounds like you have clinical depression. i notice a lot of the things you say and feel i recognize in me as i have depression. almost trudging along. could you get some help?

 

[Bettysue]

I am about to book a conversation with our GP. I had a bad spell of anxiety 5 years ago when my partner was having scans etc and the realisation hit me that this was the slippery slope.That was my lowest point and medication worked but I will not allow myself to go back to that. It was awful.
He will not be self funding so I am about to commence the battle with social work asking for a long term and also a financial assessment.
The problem is that apart from his dementia he is physically quite well so I feel I will have a fight on my hands and it may take time but in my mind the decision is made. I am becoming convinced that in the right setting he will do better than with me.

 

[Sarasa]

@Bettysue, I'm glad you are contacting the GP about your own health needs. Good luck with social services. Maybe go through all your posts so you can provide a full picture of all the difficulties you and your husband are facing. From what you've said it sounds like a move into care would be in his best interests, but you'll need to make sure social services are aware of all the problems that you are facing.

 

[Shedrech]

hi @Bettysue
when you contact Social Services for a re-assessment of your partner's care needs, please don't say he is physically fit so may not qualify for residential care, instead list out your concerns so it's clear how much input comes from you and just why residential care would now be the way to provide for his care needs and would be in his best interests

from your post alone I've listed below many points, and I'm sure you can add more ... think especially of what you have to do eg YOU undress him because he cannot follow instructions to do it himself ... YOU shower him, he no longer does this for himself ... think of eating and night times too eg are your nights disturbed because he wakes/needs the loo ?

My partner:
can no longer communicate
can no longer understand me
simple instructions which are the same every day are lost on him. Things like…take off your socks, go into the shower, put on your pyjamas mean little.
I have to tell him what to do or not to do
His day consists of getting up mid morning, perhaps a short dog walk, lunch, sleeping all afternoon
he stares mindlessly at the tv, nothing registers.
no conversation and no interest in very much
the world is very confusing to him
There is a very blank look in his eyes
I’m at a loss to know how to stimulate him
If anyone comes in he just falls asleep
now coupled with increasing episodes of double incontinence. On Monday he had to be showered 3 times and last week on return from day care all clothing was beyond washing so binned
He does have:
day care twice a week
a sitter one afternoon

I am close to carer burn out:
feelings of despair and loneliness
I care for him out of a sense of duty
resentment is mounting and it definitely erupts at times.
doing anything for myself is becoming more of an effort
feel so fed up with it all.
emotionally I have no more to give.
I go through the motions because right now there is no alternative.

I hope you have claimed Attendance Allowance on his behalf

you don't mention home care visits, so it may be suggested that you have these, 4 a day, before they will consider residential care ... so be clear on what happens that a home carer cannot help with eg personal care/toileting which doesn't happen on cue at given times, and especially any nighttime issues

 

[Bettysue]

Thanks for your very practical advice. I do keep a diary of the main points of his care needs and incidents which occur. And I will certainly do preparation before any assessment is done. He has personal care for showering 4x per week and he does receive Attendance Allowance at the higher rate. Although he is fairly physically fit he has definitely deteriorated in the last couple of months…less steady on his feet and deteriorating motor skills in his right hand which means he needs help with eating.
I realise I do so many things without thinking that need to be noted. It was a bit like that applying for AA when I suddenly realised what I was actually doing every day.

 

[silkiest]

Hi @Bettysue, it might be a useful exercise to go through the AA application form again. If its a while since you filled it in before it may make it easier to see the changes in your husband and the answers would give you a very good base to explain to social services exactly what help is needed for your husband. If he's on the lower rate and you now have to toilet and clean him during the night or if he wanders you will be able to ask for reassessment for the higher rate

 

[Bettysue]

I already have the higher rate for him but I will make a detailed list of everything that he needs done.

 

[Mr.A]

I’ve posted similarly before but I am very much feeling that I live in a bizarre vacuum where every day is spent on the same treadmill.My partner can no longer communicate or understand me. Even simple instructions which are the same every day are lost on him. Things like…take off your socks,go into the shower,put on your pyjamas seem to mean little. I feel like a sergeant major constantly telling him what to do or not to do. His day consists of getting up mid morning,perhaps a short dog walk,lunch, sleeping all afternoon then he stares mindlessly at the tv. I’m sure nothing registers. There is no conversation and no interest in very much. I think the world is very confusing to him. There is a very blank look in his eyes. I’m at a loss to know how to stimulate him. If anyone comes in he just falls asleep. It all feels so hopeless. This is now coupled with increasing episodes of double incontinence. On Monday he had 3 showers and last week on return from day care it was a case of all clothing in the bin,beyond washing.
I do have day care twice a week for him and a sitter one afternoon for which I’m grateful but it does not mitigate the feelings of despair and loneliness. I feel that I care for him out of a sense of duty but resentment is mounting and it definitely erupts at times. Even doing anything for myself in the free time I have is becoming more of an effort. I just feel so fed up with it all. I wonder if it is reaching the stage where he might actually benefit from 24 hour care. His needs are met physically but emotionally I have no more to give. I go through the motions because right now there is no alternative.

I think Sue you have reached the point after doing your very best for him where you must for his sake and your own sake seriously consider full time care in suitable accommodation. This is the alternative and unfortunately has to be faced. I had this dilemma with my dear wife of 59 years but realised that her needs are beyond what I can possibly attend to and indeed deserves.. She has now been in care for four months and receiving all the care and attention she requires. Obviously I only wish we could revert to our previous way of life but I have to be content that she is safe and secure where she is. I am fortunate that I am able to visit her every day and whilst she doesn't recognise me as her husband we seem to have formed a firm bond and we can enjoy each others company. I would certainly advise you to do whatever you think is best. Do not be swayed but give careful consideration to the future best outcome for you both. My thoughts are with you and I hope that whatever you decide will give you peace of mind.

 

[Lbow]

I feel so sorry for people on this thread - my mum has early onsent dementia for about 7 years and can do little more than babble. For funding purposes, we invested some money for a specialist solicitor the challenge the social services payment (the solcitior costed about one week equivalent for a day carer). Stressing what is in her 'best interests' made them eventually pay the full ammount for 24 hour care.
One other random issue - we bought my mum a doll recently and she loves it - cradles it, bathes it etc and just stops her staring into space and has kind of given her a focus in life - strange but true.

 

[Maggiex]

Iseparated from myhusband 18 yrs ago but am now caring for him in his own home trying to keep him independent.
He is not incontinent but I identify with the rest of your situation, except I cannot get day care... do you pay privately? the local council offered a knitting circle or exercise ! Wits end is where we all iive . i wrote this poem in sheer frustration
Behind your eyes I see the fear
The world has changed for you
as you have changed my dear
No longer does the day make sense
You cannot remember why or where
Your clever mind has left you scared
distressed
Alone , though I am there

 I know you never will again
Hold my hand and talk of love
Discuss the doings of the day
 Events that came and went away
Have left a misty fog
If I could have just one more day
When you were here to talk to me
Strong and vibrant in your speech
With  lots of things to say

No more to repeat over and over
and search  what might be lost
 This awful incessant disease
Brings with it dreadful cost.
 I find it hard to bite my tongue
 To smile unquestioning and say
 It will be fine I am here and will not go away
Inside I scream Inside I scream
Inside i weep but will not show
to you the sorrow that I bear
For you can never share.

 

[Jude48]

I think Sue you have reached the point after doing your very best for him where you must for his sake and your own sake seriously consider full time care in suitable accommodation. This is the alternative and unfortunately has to be faced. I had this dilemma with my dear wife of 59 years but realised that her needs are beyond what I can possibly attend to and indeed deserves.. She has now been in care for four months and receiving all the care and attention she requires. Obviously I only wish we could revert to our previous way of life but I have to be content that she is safe and secure where she is. I am fortunate that I am able to visit her every day and whilst she doesn't recognise me as her husband we seem to have formed a firm bond and we can enjoy each others company. I would certainly advise you to do whatever you think is best. Do not be swayed but give careful consideration to the future best outcome for you both. My thoughts are with you and I hope that whatever you decide will give you peace of mind.

Sue I am sorry to say that no one really cares apart from others in the same situation because nobody can understand or appreciate what hell it is . Lots of lip service is paid lots of booklets lots of ‘advice’ on line some areas have groups and clubs but singing knitting etc is no use to most of us.
Why should we have to pay for care of a sick person. Why should half my house be spent on care for some who worked from the age of 15 to 65full time including 11 years in the R A F.
Like many other Carers I do it out of duty now I am bitter and angry unhappy and resentful

 

[katetk]

I also am looking after my husband who has Alzheimers and I now cannot understand him as he talks nonsense and he cannot understand me either so life is very very frustrating but I had a hypnotherapy session last week which was wonderful and helped me relax and I have been much more calm this week and able to smile which I have not done for a long time. In the session I was fully awake all the time but just in a very relaxed state and the therapist talked me through my issues and reinforced all the positive things and encouraged me to let go so I am most surprised but it has worked but I don't know for how long but I am sure it is better than taking pills.

 

[Diane44]

Iseparated from myhusband 18 yrs ago but am now caring for him in his own home trying to keep him independent.
He is not incontinent but I identify with the rest of your situation, except I cannot get day care... do you pay privately? the local council offered a knitting circle or exercise ! Wits end is where we all iive . i wrote this poem in sheer frustration
Behind your eyes I see the fear
The world has changed for you
as you have changed my dear
No longer does the day make sense
You cannot remember why or where
Your clever mind has left you scared
distressed
Alone , though I am there

 I know you never will again
Hold my hand and talk of love
Discuss the doings of the day
 Events that came and went away
Have left a misty fog
If I could have just one more day
When you were here to talk to me
Strong and vibrant in your speech
With  lots of things to say

No more to repeat over and over
and search  what might be lost
 This awful incessant disease
Brings with it dreadful cost.
 I find it hard to bite my tongue
 To smile unquestioning and say
 It will be fine I am here and will not go away
Inside I scream Inside I scream
Inside i weep but will not show
to you the sorrow that I bear
For you can never share.

I found this poem so very moving. It echoes everything about my dear husband's dementia. I have copied it to a word document (hope you don't mind) so that I can access it easily. It makes me cry, but also helps me to know someone else is experiencing what I am. So Thank you. Diane44

 

[Margeaux]

I’ve posted similarly before but I am very much feeling that I live in a bizarre vacuum where every day is spent on the same treadmill.My partner can no longer communicate or understand me. Even simple instructions which are the same every day are lost on him. Things like…take off your socks,go into the shower,put on your pyjamas seem to mean little. I feel like a sergeant major constantly telling him what to do or not to do. His day consists of getting up mid morning,perhaps a short dog walk,lunch, sleeping all afternoon then he stares mindlessly at the tv. I’m sure nothing registers. There is no conversation and no interest in very much. I think the world is very confusing to him. There is a very blank look in his eyes. I’m at a loss to know how to stimulate him. If anyone comes in he just falls asleep. It all feels so hopeless. This is now coupled with increasing episodes of double incontinence. On Monday he had 3 showers and last week on return from day care it was a case of all clothing in the bin,beyond washing.
I do have day care twice a week for him and a sitter one afternoon for which I’m grateful but it does not mitigate the feelings of despair and loneliness. I feel that I care for him out of a sense of duty but resentment is mounting and it definitely erupts at times. Even doing anything for myself in the free time I have is becoming more of an effort. I just feel so fed up with it all. I wonder if it is reaching the stage where he might actually benefit from 24 hour care. His needs are met physically but emotionally I have no more to give. I go through the motions because right now there is no alternative.

Reading this feels like I’ve written it myself as this is exactly what I am experiencing. My husband is age 63 and was diagnosed sev eral years ago. He lacks basic understanding and now needs 24/7 care. I am currently exploring care homes for respite, but know this will be the only option soon. It’s been a very emotional day as I have discussed this with our three sons.

 

[jeaniebeanie]

I can so relate to all your posts.I am trying to care for my partner even though I did actually leave him last year due to his abuse.I came back out of sympathy and a sense of duty.I am now questioning why I am here and feel resentful and unhappy.I am waiting for him to be reassessed by the mental health team .He needs help with day to day living but so far refuses to accept it.He stays in bed most days,never gets dressed,showers once every 2 or 3 weeks,and eats very little.He doesn’t speak,doesn’t want visitors and I feel like I’ve been left to cope with this on my own.I am trying to remain optimistic but as time goes on I am feeling more and more depressed.
Sorry for moaning everyone I guess I’m just feeling sorry for myself tonight.
Love to all carers

 

[Libbybookworm]

I’ve posted similarly before but I am very much feeling that I live in a bizarre vacuum where every day is spent on the same treadmill.My partner can no longer communicate or understand me. Even simple instructions which are the same every day are lost on him. Things like…take off your socks,go into the shower,put on your pyjamas seem to mean little. I feel like a sergeant major constantly telling him what to do or not to do. His day consists of getting up mid morning,perhaps a short dog walk,lunch, sleeping all afternoon then he stares mindlessly at the tv. I’m sure nothing registers. There is no conversation and no interest in very much. I think the world is very confusing to him. There is a very blank look in his eyes. I’m at a loss to know how to stimulate him. If anyone comes in he just falls asleep. It all feels so hopeless. This is now coupled with increasing episodes of double incontinence. On Monday he had 3 showers and last week on return from day care it was a case of all clothing in the bin,beyond washing.
I do have day care twice a week for him and a sitter one afternoon for which I’m grateful but it does not mitigate the feelings of despair and loneliness. I feel that I care for him out of a sense of duty but resentment is mounting and it definitely erupts at times. Even doing anything for myself in the free time I have is becoming more of an effort. I just feel so fed up with it all. I wonder if it is reaching the stage where he might actually benefit from 24 hour care. His needs are met physically but emotionally I have no more to give. I go through the motions because right now there is no alternative.

 

[Libbybookworm]

I totally empathise. I really miss my husband and feel so lonely. We share our home together but the man I married is no longer there. I talk to him but there's no understanding. He rarely talks instead makes a noise and points. We used to have interesting, funny conversations with shared jokes. We loved going to restaurants with friends and family; it's no longer possible. I want to keep him at home as long as possible but it's physically draining as he's much bigger than me and I'm very arthritic. Who knows what the future brings.