Husband in care home - am I worse now struggling

[Pollyanna153]

My husband went into care early April . He has fronto temporal dementia
He has lucid moments. I take him out a couple of times a week
He has dreadful hallucinations hearing things all part of ftd
Struggles to speak sometime lots of problems will the ftd
The lucid moments are killing me just now he asks if we can go out for a few hours why can't I go home for few hours . Sleep there. How has it come to this tells me to sort it as we worked all our life should be doing things I don't understand he says
He gets on to me to sort it all out I can't make it better. Got the terrible guilt around me .
I was at carer crisis point when he went in doctor was worried about me going under
I have cried buckets today don't know what to do what to say to him it no easier now he in care except that I not looking after him at home
Top and bottom is I suppose I can't say you can't come home
This bloody dementia it's not fair none of us deserve this

 

[Aisling]

My husband went into care early April . He has fronto temporal dementia
He has lucid moments. I take him out a couple of times a week
He has dreadful hallucinations hearing things all part of ftd
Struggles to speak sometime lots of problems will the ftd
The lucid moments are killing me just now he asks if we can go out for a few hours why can't I go home for few hours . Sleep there. How has it come to this tells me to sort it as we worked all our life should be doing things I don't understand he says
He gets on to me to sort it all out I can't make it better. Got the terrible guilt around me .
I was at carer crisis point when he went in doctor was worried about me going under
I have cried buckets today don't know what to do what to say to him it no easier now he in care except that I not looking after him at home
Top and bottom is I suppose I can't say you can't come home
This bloody dementia it's not fair none of us deserve this

It is heartbreaking. The only thing I can say to you is can you take a small break from visiting? In my experience, very few people think about the the carers. We are left in an impossible situation. I think it is the most misunderstood illness that impacts on so many other members in the family. Ultimately in my opinion, at some stage in the future we may have massive illness brought on my stress. What will happen then?

Aisling xx

 

[canary]

No, of course you cant just say - no you cant come home. Im afraid that this is a common problem and even in his lucid periods he wont understand why he cant come home, so dont try and explain. Instead, try love lies - yes you will sort it out, but you will have to talk to the doctor (who just doesnt seem to want to allow it ), or the heating has gone wrong in your home and you are going to have to get a new boiler (and doesnt it take an age for workmen to arrive to do things? ), or .......
Make it someone elses fault, commiserate with him (yes, its just so unfair, but, unfortunately no-one is listening to you..........) and divert him into something else - maybe a trip to a garden centre with coffee and a big slice of sticky cake

PS - get a big stick and knock that guilt monster off your shoulder - it has no business whispering in your ear when you have had to make such a hard decision which was needed to keep him safe

 

[Redpoppy]

Guilt

I am also experiencing guilt, and at the same time disappointment . My husband has late. Stage heart failure. with dementia. Palliative care at home was being organised using the local Hospice team. ALL the medical professionals have been marvellous, but evenTHEY couldn't get an occupational assessment appointment for us. He now has to. be admitted to the Hospice because they and I cannot lift or move him without necessary aids. Where is all the support we are told is available to us?
I wanted my husband to spend his last days here at home with me and our family who live nearby. I was told I would have to wait for maybe 6to 10 weeks for appointment. I know I have done as much as I possibly can in the circumstances but STILL feel sad and defeated. I hope things will improve for you and of course your husband . You know you are doing the best you can. Take care and be strong

 

[sah]

Hi -all sounds very familiar! Have you spoken to your GP? Mine has referred me to a counsellor ( it was that or he was pushing me to take anti depressants, which scare me)-through the NHS -and she has been wonderful. Just being able to tell someone-without further burdening family and friends who have been so supportive-is helpful. Maybe see if there is such a service available for you in your area? We do need help and support -some people ( not carers-but well meaning) seem to think life is easier once our OHs go into care - but, as she told me - we are now left to deal with a huge transition in our lives and it's hard!

Good luck-hope things get easier for you.x

 

[Pollyanna153]

Hi -all sounds very familiar! Have you spoken to your GP? Mine has referred me to a counsellor ( it was that or he was pushing me to take anti depressants, which scare me)-through the NHS -and she has been wonderful. Just being able to tell someone-without further burdening family and friends who have been so supportive-is helpful. Maybe see if there is such a service available for you in your area? We do need help and support -some people ( not carers-but well meaning) seem to think life is easier once our OHs go into care - but, as she told me - we are now left to deal with a huge transition in our lives and it's hard!

Good luck-hope things get easier for you.x

Thank you I am dropping a note st home after putting in writing asking for advice am I doing more harm than good taking him out etc

 

[Pollyanna153]

Hi -all sounds very familiar! Have you spoken to your GP? Mine has referred me to a counsellor ( it was that or he was pushing me to take anti depressants, which scare me)-through the NHS -and she has been wonderful. Just being able to tell someone-without further burdening family and friends who have been so supportive-is helpful. Maybe see if there is such a service available for you in your area? We do need help and support -some people ( not carers-but well meaning) seem to think life is easier once our OHs go into care - but, as she told me - we are now left to deal with a huge transition in our lives and it's hard!

Good luck-hope things get easier for you.x

Was in anti depressants for eight weeks was like a zombie I am getting a shih tzu puppy in four weeks for companionship and will give me strength to do training FUN and walking it I feeling very little lonely now
Thanks for info

 

[sah]

Thank you I am dropping a note st home after putting in writing asking for advice am I doing more harm than good taking him out etc

I've begun to realise that OH is not happy being taken out of care home now-after our spending most of our lives being outdoors! He gets agitated about getting back and frets-it's just not worth the angst. Plus I've been told I mustn't take him in the car without another person with me - in case he reacts when I'm driving. Does your care home do trips out? Maybe going along when they take him out may be easier?

 

[Pollyanna153]

I am also experiencing guilt, and at the same time disappointment . My husband has late. Stage heart failure. with dementia. Palliative care at home was being organised using the local Hospice team. ALL the medical professionals have been marvellous, but evenTHEY couldn't get an occupational assessment appointment for us. He now has to. be admitted to the Hospice because they and I cannot lift or move him without necessary aids. Where is all the support we are told is available to us?
I wanted my husband to spend his last days here at home with me and our family who live nearby. I was told I would have to wait for maybe 6to 10 weeks for appointment. I know I have done as much as I possibly can in the circumstances but STILL feel sad and defeated. I hope things will improve for you and of course your husband . You know you are doing the best you can. Take care and be strong

I feel. Could write a book about my experiences about the non care where is it all that is advertised buddies etc I have spent so much time going over same ground with social services councils etc it is a joke

 

[Pollyanna153]

I've begun to realise that OH is not happy being taken out of care home now-after our spending most of our lives being outdoors! He gets agitated about getting back and frets-it's just not worth the angst. Plus I've been told I mustn't take him in the car without another person with me - in case he reacts when I'm driving. Does your care home do trips out? Maybe going along when they take him out may be easier?

They just got a new manager who is starting I get activities going
He is not somebody who joins in easily
I said ask will he help, or I need you to help me just to getting him to join activities

 

[Loopiloo]

I feel deeply for you Pollyanna. My husband was the same when he went into the care home, similar questions and deep anguish, re home and it is utterly heartbreakiing.

As Canary said you can try “love lies” as this can help to some extent. My husband had been in hospital a long time so I said although he was better he still needed nursing care but the hospital needed the beds for more ill patients and he was here to recuperate. At best it’s a stop gap but you have to play it by ear and according to your circumstances.

I could never have taken my husband out as it would have made him worse on returning to the care home so I left that to the carers and he was fine with them when they took him out in the wheelchair.

It took my husband a long time to settle and every so often the going home came up. But gradually with less terrible anguish for him. It was the worst experience ever during this time, and sometimes he was so ‘aware’ there was no distracting him. But gradually it did improve.

Sorry no advice but I feel for you both. It is terrible seeing your husband like this, very painful for each of you in different ways.

We all feel guilt, even although we should not because we have done everything in our ability but I do hope it does all work out in time for each of you. Then it is possible to have good visits and enjoy them, treasure them, and somehow get through the not so good ones.

Good luck,
Loo xxx

 

[Pollyanna153]

I feel deeply for you Pollyanna. My husband was the same when he went into the care home, similar questions and deep anguish, re home and it is utterly heartbreakiing.

As Canary said you can try “love lies” as this can help to some extent. My husband had been in hospital a long time so I said although he was better he still needed nursing care but the hospital needed the beds for more ill patients and he was here to recuperate. At best it’s a stop gap but you have to play it by ear and according to your circumstances.

I could never have taken my husband out as it would have made him worse on returning to the care home so I left that to the carers and he was fine with them when they took him out in the wheelchair.

It took my husband a long time to settle and every so often the going home came up. But gradually with less terrible anguish for him. It was the worst experience ever during this time, and sometimes he was so ‘aware’ there was no distracting him. But gradually it did improve.

Sorry no advice but I feel for you both. It is terrible seeing your husband like this, very painful for each of you in different ways.

We all feel guilt, even although we should not because we have done everything in our ability but I do hope it does all work out in time for each of you. Then it is possible to have good visits and enjoy them, treasure them, and somehow get through the not so good ones.



Loo xxx

Thank you. Know there no answer just feel better getting it down on here