Real stories

My wife’s person-centred care has improved her life with dementia, and mine

My husband was diagnosed with mixed dementia inJanuary 2020 coinciding with the strict regulations resulting from the Covid epidemic. In January 2021 he had to go into hospital as it was no longer safe for him to be at home, he had started wandering off and had no idea where he was.Throughout 2020 all his appointments were cancelled, and we received no support. In February 2021 he was discharged from hospital and sent to a care home, and I was not allowed to visit him until towards the end of March, and then for only 1 hour in the foyer, where there was no privacy, and we were separated by screens. My husband looked confused and very unhappy, as I was. I was never allowed to see his room, not even when I succeeded, after a lot of hassle, in finding him another care home. He actually thought he was in a prison and kept asking me what he was supposed to have done wrong. The manager and the nurse there lacked both compassion, an understanding of dementia and professionalism. The Care Quality Commission rated the home as needing improvement in 3 areas, including the fact that it was not well led, but little action, if any, was taken. In August 2021, I found a much better home for my husband where he has settled down well. The Manager there was very supportive. Unfortunately the Manager left in December 2021 and I feel the home has since gone downhill in some respects. I know there are some good care homes but matters can quickly change since there is more often than not a high turnover of staff. Residents are not commodities, many of them have to fund themselves using their hard earned life savings, very often leaving their loved ones to struggle financially, in addition to all the other problems they have. All this just because they are unfortunate to fall ill, dementia patients appear to get less help than others. The extortionate fees are not good value for money. It is high time care homes were regulated by the government, and not treated as businesses. Most of the residents have paid into the health service all of their working lives and self funders should be given some financial help with their fees however much their savings are. We have had a horrendous time for the past 4 years. My husband is a kind and caring person and should never have been treated so uncompassionately by some people who should know better. The government particularly should be doing it's job and looking after all of it's citizens, including the most vulnerable.

Hello Trevor Thank you for sharing your journey. Your storey sounds very similar to mine in that my wife has early onset Alzheimer’s however our transition to a care home was a disaster. My wife’s interests etc are very similar to your wife’s so my question is would you share the name and location of the facility? I suspect it is nowhere near me but I have to ask as I am desperate to find a place for my wife that would aid in providing her a good quality of life. Thank you. Paul

My husband has Vascular dementia and was diagnosed in Sept 2020 although it was obvious a year earlier that he had problems. I am his full-time carer with just a day when he goes to day care. However he suffers from incontinence and overflow consipation and as he will not let me toilet him we have constant accidents on himself and on the floor and his bed.. He doesn't know I am his wife of 58 years or that he has children or that lives here. I have reached breaking point and reluctantly in spite of feeling I am abandoning him and many tears I have decided it is best for both of us that he goes in a care home as I am getting quite nasty and resentful with him although he forgets within a minute. I just hope he will be happy in one I have found for him which although expensive is bright and cheerful, spotlessly clean and the residents all look happy , well cared for and entertained.

Hello Trevor. I completely connected with your story. My husband was diagnosed with F.T.D. dementia in 2017. with speech aphasia. Up until approx 6 months ago i looked after him along with carers popping in twice daily. This worked well at the beginning but with the decline in the dementia it became apparent we needed more help. I thought I would be able to look after him longer at home but this was no longer viable. He's now settling in to a Dementia Nursing home 21 miles away from where i live. It's been, and still is, a roller coaster of emotions but as you said i couldn't give the 24/7 care Andrew needed and trust he will continually get his needs met in the home. I am learning to adapt to a life at home without him and visit him regularly at the home. I want to see him with quality of life for as long as possible.

I wanted to add the poem I wrote a couple of weeks ago after another visit to feed my husband his lunch. He has advanced dementia and can hardly communicate at all now.

On Saturday you said my name.
It was a big surprise!
It shows, in you, I still remain Somewhere deep inside.

I wish that we could talk again
The way we used to do.
Walk hand-in-hand and reminisce,
Sit and laugh a share a kiss.

What is behind that shuttered door?
What IS inside for you?
Wish I could know you once again
And you could know me too.

I tell you that I love you still,
But do you understand?
I've loved you all these many years
And I always will.

C Trish Aze

I related to much of you story. My husband was diagnosed with mixed dementia in 2013. He went to a number of groups at church and after a while to a weekly dementia club. We'd go out for a coffee or meal weekly. He enjoyed all the social activities and liked talking with people. He also started going to a gym after being on a trial about dementia and physical activity. Of course, in time things got more difficult. We moved near my daughter's by the sea where it was level to walk daily. She had him one day a week to give me a break (she is a trained carer.) He began to fall a lot and it became difficult to get him into and out of bed. He was inconsistent at night by the. I had carers to help at bed time but after two weeks they said they couldn't manage (tho' I'd been managing on my own till then!) Two days later, I was diagnosed with breast cancer That was the last straw and I was utterly exhausted. We knew of a Home through friends and he went there a week later last July
. I had lots of tears afterwards but never doubted that it was the right thing to do. He has settled well now and is well cared for. In August it will be our 60th wedding anniversary.

My Dad was in a home that was amazing for the last year of his life. He was happy most times but it was my Mum who suffered she never forgave herself for Dad being in the home. I'm so glad your story worked so well xx

I looked after my first wife for 29 years, she had Parkinsons followed by Lewy Bodies, sadly after growing up as kids together after 62 years together I lost her nearly 10 years ago. I remarried someone I had known for about 15 years who had Cared for her husband with Alzheimers, sadly now after 6 years of marriage I am a Carer again as she has been diagnosed with Alzhimers, someone does not seem to be smiling on me yet on the other side of the coin being able to Care for that person I feel satisfaction. It would be good if only we had contacts online to be able to exchange emails on day to day life as friends always run over the hill and vanish.

When my mom needed full-time care , 5 years ago, we found a great facility. Unfortunately she did not adapt well. The one thing I know about Alzheimer's from friends dealing and stories, is it is different for every individual. We've not been here before, and we seek information to make the best decision, but decisions have to be made. Even though mom did not adapt well, I'm thankful for the aides and providers, and the care home. Dad had cared for her, and protected her, as long as he could. The Covid lock down was difficult/horrible, but decisions had to be made by these administrators. I'm thankful for the Alzheimer's associations that give information and resources to help us make the decisions, that come as transitions become necessary. I'm glad many of your loved ones adapted well. I have no regrets. We've made the decisions we felt were the best at the time. At one point I didn't believe in angels, but mom has been cared for by a plethora of angels (doctors, aides, nurses, and administrators). I continue to thank God every day for the strength, friends, family, and care homes as they continue to help with mom's care. Keep up the good work as you care for your people.

Trevor, I have just read your blog and also the string of comments with your answers. I found it very comforting and reassuring because my situation is not a million miles away from yours. My wife, Eileen, was diagnosed with mixed dementia in 2015, followed two years later by surgery to remove cancer in her stomach. I am now at the stage when I am wondering what will be the trigger to make the move to place her into full-time care.
You have my email address with this post and I would really value having an opportunity to talk with you in some detail if this is possible.
David

You made the right decision for yourself and your family ,It’s lovely to hear how Yvonne has
Settled into her care home . My mother has been in a small family run care home for nearly six years now and the care she receives is amazing ,it also enriches my life on visits to be able to interact with other residents, some who may not have family to visit them 😢

I can see that you have sooo many comments to read but I just wanted to say thank you for sharing your and Yvonne's story. I have been on my own 'brain-injury' journey and thanks to the care and support I received (despite the dreaded covid times) I am well on the road to recovery. Meeting so many people suffering from similar disabilities to myself has made me determined to do what I can to help other people in similar circumstances. I have started a counselling course and fully intend to qualify, train, and help other people that are struggling .... I intend to fully use the brain capacity that I have left to give something back to others.

Truly good to hear of a situation that has been working so well , apart from covid intruding. I did try my father at a well-repcted care home for a while but he hated it and I could understand why. I think the staff were able to attend to physical needs but there was little to help him mentally . And the difficult behaviour of fellow residents made matters worse. Fom what small bits I could see of the set-up (covid meant I only saw glimpses of the place internally) it felt like the emphasis was on how it would appear to the family members who would have visited pre-covid. The furnishings were smart and fashionable but not always suited to older people's needs and there seemed little to actively interest or involve residents , so sitting or pacing corridors was common. There was a garden and a greenhouse -which is one of the reasons I was drawn to the place . But the greenhouse turned out to be totally empty and I don't think my father was ever taken outdoors in his weeks there.
After his stay there I arranged for live-in care back at home. His carer was brilliant and dad was very comfortable with him . It was about £1400 per week , and I needed to be available to relieve the carer for a couple of hours per day, The night shift was more tricky as I could only manage some waking nights , and that was wrecking my poor sleep pattern. A further paid carer was around £200 per night .The problem was about finding sufficient staff to cover 24 hour care .At one time the agency asked me (in the period of pre-vaccination covid ) whether I would be OK with them flying a carer in from Europe . Sadly my father eventually died in a care home which held such bad memories I could never face going near again.

Trevor, your story is instructive and very useful! My wife was officially diagnosed with Vascular dementia in August 2019. I'd asked for her to be tested in Aug 2016, having recognised the symptoms in 2014. That was a difficult enough step to take in itself, my wife being the tough character she is! In the event, she completely blagged her way through that first test. Shock! But cutely very impressive!!! By 2019, even she couldn't fool anyone! Across 2017/18/19 we packed as many (new and repeated) experiences and memories as I could possibly get into our lives, knowing that time was running out for the many things we did & shared. Thank God for those years! It took 2 years for me to work out how best to care for her at home, like learning on the job. Lots of trial & error. I introduced visiting carers in April last year (just one lunchtime/afternoon a week), to give my wife a more varied companionship. That worked very well and in effect gave me an afternoon off once a week, for liquid lunches with pals or visits to the dentist! That successively had to expand - its now 4 lunchtimes a week and 1 afternoon, which is terrific - its become almost like a party every day! We are very lucky in all this.

I'm coming to the point now! Last week I had a bad dose of flu which, short though it was, brought me to my knees, rescued only by our son, who is naturally a tower of strength. I'm a tall, reasonably fit guy & have no problems with the physical (or indeed the emotional) side of things. But suddenly, I just felt I had had enough - burnt-out, like you say. My wife has many significant problems now which take a strong routine & a lot of energy to deal with. Cognitively its been a mixed experience for her. Socially, she is remarkably capable, hampered only by her short-term memory loss. But with family, friends & strangers, she is still delightfully companionable. So we can always put on a good show! Now I have recovered my composure, we carry on regardless! But like you, it has come home to me that I need to start looking at alternatives for my wife's care. When the moment is obviously right, I don't expect a troubled transition to a home - she has a clubbable personality. But now, so much is dependent on my own good health; but current arrangements are an increasingly high risk. Still, I reckon we'll get another18 zany months sharing the same bed! Cheers, Trevor and to all of you on here! R.

Hi I am so confused with everything, I have asked for a financial assessment and put on a waiting list, heard nothing since, I get no help from anyone I think my husband has had a third spike in his vascular mixed dementia and prostate cancer he takes medication for him to go to the toilet and then he has accidents everywhere, plus he can't see very good so doesn't notice its everywhere in bathroom plus catheter accidents, very selfish as well, when do you know that you can't do this anymore