Real stories

Guilt is everywhere for carers of people with dementia

My 68 year old husband has mixed Alzheimer's and vascular dementia, and is also a type 1 diabetic. It was diagnosed in December 2017, and we have received no follow up care since that date. He had what I can only describe as a 'psychotic episode' at 1am in a hotel in France, at the end of our skiing holiday. It resulted in him punching me in the face, in the belief that the building was collapsing and I was trying to prevent him escaping. The night porter called an ambulance, which arrived with paramedics, a doctor, three firemen and two policemen. We were brought home by our insurers, with a paramedic on hand just in case my husband became aggressive. He's now been in hospital in the UK for two weeks, while doctors try to decide on suitable care package. the diabetes adds an extra layer of dependency, because he can no longer do blood tests or administer his own insulin.
Telling friends and family that I am too scared to bring him home has left me feeling desperately guilty. I know it is not he who hit me, but the fact remains that it could happen again as the delusions increase and I may not be so lucky as to escape with only a bloody nose.
With each day that passes, I hope for a swift end to his suffering, which has robbed him of enjoying his longed for retirement, his family and friends.
I knew, in theory, what to expect as this cruel disease progressed, but the stark realities proving far, far worse than I could ever have imagined.

My lovely husband Michael has been in a care home since march 2018 he has vascular dementia we have been married for 64 years and I feel I have let him down not being able to look after him at home we have a lovely supportive family who help me as much as they can but this awful feeling of guilt will never leave me I try and see him every day and bring him home on Sundays but it never seems enough he has been asking me why can't he come home to live with me I feel so awful as I want him to come home but I know I won't be able to manage him the sadness I feel overtakes very thing and I feel I don't want to live but I know without my visits it would be unbearable for him how can I carry on.

Malonu skaityti!

My name is Chris in my mid 60,s and I think i have memory probs etc. I feel for you as Year’s ago my mother developed Alzheimer’s and had to into a home. The time leading to it was awful for us all to see her change each day I feel very sorry for you, but try to think your husband is probably unaware of how he is but we none of us know truly how it feels. Try to keep in your mind what he was like before and focus on that.

My husband has just recently been diagnosed with Alzheimer’s and Vascular Dementia too. Life at the moment is fairly normal ( or am I just getting used to his forgetfulness?) and to read other people’s experiences is helpful and sometimes not so.
It makes me feel I am not alone in this experience , there is help out there, but it also it makes me dread what lies in store. One day at a time I tell myself and don’t look too far ahead.
I hope I can be as brave and selfless as the people who have shared their story. Thank you.

Ntiebo, your story could be mine. We didn't realise for several years what was going on with our mum, putting her increased confusion down to her profound deafness, urine infections - anything other than the truth - probably because we didn't know how to fix it. I now know differently, through volunteering with the Alzheimer's Society. I've also come to realise that we really shouldn't beat ourselves up about this - even experts in the field get it wrong. Best wishes for the future.

I have been struggling since 2014 when my husband was diagnosed, although I knew something was wrong much earlier. He has Lewy Body dementia which is particularly cruel and has been in a home since June this year. I find I can only visit him every other day as I need that alternate day just to pull myself together. The guilt is ALWAYS with me, no matter what I do, but deep down I know I could not care for him at home. The support of family and friends has been invaluable, but you always come home now to an empty house. It's just awful.

How wonderful & brave of you all to speak out & tell the stories of there loved ones living with this dreadful illness! I myself have just started on this path, with my dearest husband who had been recently diagnosed with ( Alzheimer’s). This newsletter is vital & helps support you, & you know your not alone.

I can't help feeling like I could have done more. It took us a while to realize our could be having dementia. In the meantime we made many wrong decisions, many nasty comments about the way she behaved. By the time we knew about it and relating it to her, I think it was too late.

Regards

Pat I feel you are talking about my guilt. My husband was diagnosed 2.5 years ago with young onset Alzheimer's. I told him then I would care for him as long as I could. On Friday I had to admit defeat and take him to full time care at the age of 67. My guilt is, as you say, a tsunami coupled with the grief and the knowledge that I can move on and he can't. He is 67 and like your husband thinks nothing is wrong with him, simply clinicians saying that to get one over on him. He hasn't known me for over a year and his delusions and paranoia grow daily. I came to a decision that if I had to listen to his many delusions I would rather do it for a few hours every other day than all day every day. I could no longer reassure him and make him feel safe and I have had no training in how to do this 24 hours a day. I would do anything to have my husband back but in truth it is probably seven years since I last spoke to him in a meaningful way. Could I have done more? Maybe. Should I have tried harder? I tell myself I should have but that's the guilt monster gnawing away at my emotions making me feel useless and selfish. I HATE DEMENTIA

Pat - thank goodness for people like you who are honest about the realities of caring for someone with dementia. There are times when we are all less than perfect, when we feel hurt, angry, rejected and unable to cope. This is because we are human. Carers need to cut themselves some slack. Even the most dedicated family member cannot keep going 24 hours a day for years on end and at some point we have to admit we need help. The more of us that speak up the better. I write about my mum's dementia in my blog and it is quite a 'warts and all' approach - but it helps me to write it and I hope it helps those who read it feel little less alone.

my husband suffers with mixed alzheimers and dementia for the past 7 yrs has been in care 5 years, the only guilt I will never get over is I vowed on our wedding day in sickness and in health and have failed, I visit him every day for at least 6 hrs. Now he has come to the final stage where I sit for hourse by his bedside, he is very ill. I am dreading the day of seperation. May God give strength He has given me to all families throughout the world to carry on .