Care Home
- Thread starter Roger S.
- Start date
Funny I was just thinking the same myself, about admitting defeat, was just going to post something. It's 4 1/2 years since my partner was diagnosed. I was sitting on the floor crying this morning because he'd got into a range and tipped over a tray with a full glass of water on. I know this has got to end before my health suffers (lack of sleep because I have to keep getting up and supervising him on the toilet in the night, otherwise he pees all over the floor, he sometimes wakes at 5 or 6 and won't go back to sleep). Even his carer yesterday said he doesn't know how I cope. He was in a care home for respite recently for two weeks, in that time they didn't manage to shower him because he got so angry and he got weird water blisters on his lower legs, so then I thought, no he can't go into a care home. It's an impossible situation, I missed him when he was in the care home and he can be so sweet that you forget the awful times. I don't think I'll be lonely, I still work, have friends and family close by and I'm a very busy person, but I will feel like I've failed him. He's going again for 2 weeks respite in August, different care home, one he was in before lockdown where he really seemed happy. I feel a compromise would be if I could take him out regularly for walks and fresh air but that's impossible at the moment with Covid, so I think I'll have to battle on for a bit longer. So, yes I know how you feel @Roger S. but others who've been through this will probably be able to post about how they've dealt with it - in fact there have been a number of posts on TP dealing with the same subject. All I can say is what I'm sure everyone else has thought at one time or another, this is the hardest thing I've had to deal with in my life and never want to go through it again!
I struggled with my Mum's dementia for 4 years. I realised I couldn't keep her safe. Trying to made me ill with epilepsy. So you have to decide who is going to take care of her if you can't? You need to arrange things now while you can without emotion. The guilt of putting a loved one in the Care Home system will always haunt us but if we keep telling ourselves "I did the best I could do" it might not feel so bad on some days, other day's we have to be kind to ourselves and let the guilt go.
My mum was diagnosed with Alzheimer's over 5 years ago. I am in the process of arranging for her to go into residential care, on the days that she is quiet I wonder whether I have made a mistake but on days like today when she is extremely difficult I know I have made the right decision.
The loneliness IS unbearable at times, especially because of lockdown, but I am so grateful that my husband went into a care home in February before the lockdown, as I just couldn't have kept him safe on my own. Of course I feel guilty, especially has he has lost so much weight, but before he was sectioned he threatened me with a hammer when I said he couldn't go out on his own. He had started leaving the house in the night in his vest and pants. He wakes repeatedly in the night, and in a care home the staff are there to help him. I was beyond exhausted, and couldn't cope any longer. I miss my husband of 44 years terribly, but he effectively left about 18 months ago, and the man in the care home isn't him any longer. Sometimes he knows who I am, sometimes he doesn't. I grieve for my husband, but there's no point in feeling guilty about the person in the home, who isn't really him any more.
There is a term used frequently in respect of one who is living with a dementia - " best interests ". That seems simplistic in respect of the actual implications which arise when the practicable reality comes about and the admission into Care takes place. But " best interests " is what one wishes for ultimately throughout the dementia journey. And yes, that nagging hollow feeling of ' guilt' is inherent in the decision to invite Care over and above that which we have given for all that time without any desire to relegate that care to others, to strangers if you will, however able and expert those strangers might be. But when there is no choice, when things are so intensely difficult and the act of day to day care becomes fragmented or nigh on impossible , the option is quite simply , no option. In Care -- good and appropriate care -- the " best interests " can be realised and the angst of that one to one care which was fraught with the unpredictable and the sheer unmanageable task of daily care with all that entailed, can be given due " best interests " in an ongoing regime devoid of the inevitable restrictions and legitimate failings which can be so easily part of one to one care at home, simply due to the workload, the pressure of a 24hour day without respite, the psychological impact of alienation, aggression , apathy and open hostility which the ravages of dementia can inflict on a Carer / Partner.
Difficult certainly. Painful unquestionably. Tearful without doubt, because the enormity of it all becomes apparent when the loved one departs the home in which all that prior to care and attention has taken place, with its moments of anxiety and upset, but also its moments of laughter and joy. Just as long as that credo of " best interests " remains firmly at the back of your mind and underwrites all that the term Care truly implies, then it is easier to sleep at night knowing that at worst, things could not be as dire as they were in the days of struggling alone at home and that feeling of helplessness growing by the hour.
The positive factor is the important one, that of "best interests " because that is precisely what one has ever wanted for the loved one. The challenge is in maintaining that credo, that fact, amidst the new and very demanding reality of a relationship set apart and subject to all manner of emotions and feelings which might arise .
With warmest wishes
I'm not sure if this is going to make sense but I'm going to write it anyway ! My husband and I don't have any children. His only brother doesn't live close by and has health issues of his own. I do have a wonderful number of family, friends and work colleagues who give me support. That said, none of them have a husband with FTD. He went into a CH close by , two years ago. The hardest decision I have ever had to make. Before lock down I visited every other day. I believed that I was doing the right thing. I was merely carrying on our life only he was there and I was here! I thought by going in so regularly he'd accept the situation and all that had changed was his room!! He didn't and still doesn't. However, when I was forced to stop visiting I saw what the CH staff had been trying to tell me. He never asked once about me. When I phoned him I felt as if I was interrupting his day !! I see now that by going in so much I was just re-enforcing the fact that things weren't "normal" . Now, I visit by appointment and just stay for an hour max not 3 or 4 like I was doing. It's very hard to accept that my "caring" role has to be left to the lovely CH staff. He is in his own "bubble" and I need to leave him there. I still feel extremely guilty and wonder if I could have tried harder but "best interests" was quoted so often I too need to accept it. He still asks me why he's there. He is unable to comprehend the care he needs and is given. Last week when I saw him he told me that he didn't need any help, he could manage perfectly well on his own until I came back from work, then on my days off I could look after him! It's heart breaking but I'm getting better at robbing him off. It helps when the staff tell me that he doesn't remember my visit or that he shows them any signs of distress. As I've said and so have a lot of others on this site, dementia is so cruel and possibly harder on their loved ones than the one who has it . Xx ok
As has been said before and remains a truth, the only 'positive' if indeed we care to use that term, is that dementia can remove the very thing which plays on OUR hearts and minds when a loved one enters Care and leaves the actual home environment. This being that nagging sense of perpetual anxiety of thought which conjures up the worst case scenario -- the loved one is unhappy, wanting to go home, alone, unwell, bewildered and hurt by the action we have taken in admitting them into Care. And so on. Alzheimer's certainly makes short term memory such that it can alleviate our anxieties owing to this factor of immediate forgetfulness in the one living with the dementia. Something endorsed by the Care staff you cite in your post. FTL also brings about that lack of sympathy or empathy which whilst very hard to accept, nevertheless enables one to perhaps depart the Home with the assurance that someone is not pining or feeling the "loss " as indeed you well do.
And you should eliminate " guilt " from your mind. You are not responsible for the nature of this disease, whatever type of dementia, it has it's own rules and will do as it so desires. What we do have as Carers is the means to understand that fact and that our loved one is wholly at the mercy of the dementia.
And yes, the Carer matters too! Something so often overlooked in the world of dementia care. Because our emotions and anxieties are just as real as the dementia, but we are cognizant with all of that unlike our loved one. Thus it is the all important focus of attention on the Carer and his or her well being which must be made a priority if we are to address the heart of person centred care, as the relationship between the Carer and the one living with dementia can only work when you have both true understanding backed up with Support.
Hi Roger. My sister and I have just been through the awful process of getting our dad into a care home. Not the same as a partner by any means but the guilt is dreadful. We couldn't visit anywhere properly and he was admitted into the first one as an emergency. We knew it wasn't right for him, but we were reluctant to move him again. However, his social worker was excellent and also the care home liaison officer for the local authority was a goldmine of help and information. Dad's been in the second care home for 4 weeks now and he's put weight on, is engaged with people and activities, sleeping less during the day and thinks he amd mum moved there together. In fact she died 9 months ago, but he hasn't accepted that. The guilt and sadness is still there for us but I feel we made the brave and right decision for dad's well being and also for our own lives and family relationships. Alzheimer's will destroy everything if it's allowed to. I wish you well.
I don't think you need to feel guilty although you might do all the same. Your thoughts are common and normal. You are doing your best to care for her and nobody could expect more. I have has a similar issue with my mother, complicated by my father's deteriorating health. Care at home has its limitations.
Hello Roger, Thank you for starting this thread and thanks also to everyone for your input because this thread has been very useful to me as well. My dads partner could no longer cope with his behaviours during lockdown and he was admitted to hospital Via A&E for a psyche assessment has later been admitted to a private dementia-led care home during the Covid lockdown. This has all been very traumatic for him and for those that love him. His dementia Symptoms (he has mixed dementia,- Alzheimer’s, lewey body and vascular dementia) have worsened terribly over the last few months. the only option to visit thus far has been to talk to him through an open window He’s always been very Frightened of being “put in a home” but is now convinced that he is in prison. He says he does Not know what he has done But he had to go to court and has been given at least 5 years and appeal has been denied. we assume this is the only way he can comprehend the fact that he is in an institution and has lost .his liberty but it seems impossoible to get him out of this loop. Staff tell us that he does not tell them this although his mood is very variable. Apparently he can be very grumpy with them but when he is in a good mood he is sociable and smiles a lot. All this background to then say that the guilt I feel for agreeing to move him is huge and yet there was absolutely no choice about it. the lack of visiting due to the continuing lockdown just adds another layer of misery on top of the situation. I understand that all Of this is caused by dementia and it seems that all families inevitably suffer some degree of guilt and/or sorrow but it does help me to discover that there is a wealth of shared experience on this forum and it is so freely shared? If anybody has any tips of how to stop the loop of being in prison that would be a big help, we’ve tried distraction by trying to change that subject but so far no joy.
