Real stories

Advice from a sole carer on sibling conflict over moving a parent with dementia into care

Am wondering whether anyone has had this strange experience as I’ve found nothing online about it:- My sister-in-law has quite advanced Altzheimer’s and is receiving 24hr care from a live in carer provided by a care agency. This carer is very hostile and unpleasant to me whenever we visit. She seems to tolerate my husband but certainly not me. It didn’t seem to me appropriate that a carer should behave in this way so I reported her after having warned her that I would do so.. Due to restrictions of data protection the agency won’t tell me anything but I think she has been spoken to. She has now changed from being openly aggressive to being passive aggressive and sulky. She appears to give our relative good physical care., which is, of course, the main thing. What worries us is that when her client approaches death, she will not notify us. We live 75 miles away so cannot just drop in on a daily basis. When I requested to know how my husband would learn of his sister’s impending demise, this carer’s response was, “Whatever” and “you’ll have to contact the office”. The office won’t be open if it was during the wee small hours but did she care....? “Whatever”! I’m astonished at such inhumanity and want of empathy. I should mention that there are no other relatives so no family networking could take place. Am I the only person who has been treated in this unpleasant way by a paid carer?

My mother has just been transferred into a care home following a 2 month stay in hospital. She fell at home and broke her neck, then got a UTI and then covid. During her hospital stay the UTIs caused her confusion, which the doc caused delirium, not dementia. One of my brothers has PofA but lives abroad, the other lives in the same town as mum. Sister lives in France, I live inUSA. My concern is she's only been in the home for a week and social services are already making decision that she's staying there permanently and PofA brother says he'll get in touch with us siblings to talk about selling her home. They're not giving her a chance to recover, she hasn't been properly assessed by a neurologist, she wants to be at her home but just needs constant care. It would be cheaper for her, even if she paid for it without county council funds. She'd be happier. Her and my dad's dream was, because they worked all their life to have a nice home, was to leave it for us four kids. I tried to get her to put the house in a Trust a year ago, both asking her, my brother and her lawyer, so her home would be safeguarded. They ignored me. What if she improves and wants to go home? She'll never have a chance to go through all her things to decide what she wants to keep with her. I have four chronic health conditions plus a heart problem and my husband has dementia I'm unable to travel back to England. I feel everything is being rushed. I feel helpless because my opinion counts for nothing anymore. The brother in England is already complaining about having to look after her, although I looked after her over 15 years when I lived in England. I just worry her needs and wishes will be ignored by everyone who has power over her. It's so very sad.

My brother lost his wife with a brain tumour last November. He had to be put in a care home with Alzheimer's. 1.month ago he started raging they want him out to another home .We are not allowed to visit in thier new pod incases he gets upset. I feel it's so inhuman he cant see his son .sister and brother .Till he is rehomed .He was a quite brother but I suppose it this horrible disease. I want to insist we see him but would this upset him more .

Hello
I have experienced exactly everything here everything from the beginning to the end of my mother’s Alzheimers diagnosis to her passing away this February 2020. To the funeral where my brother humiliated me in front of the priest insulting me at the time of mums death. I have never got over any of it and sank into deep depression. I had shared power of attorney and enduring POA and Guardianship however my sister did not want the responsibility so I gave up my job home and life. I wished I consulted a Solicitor and I did go see a mediator which she refused to go to. They have pushed shoved insulted stopped contact and refuse to discuss it saying they want to stay out of it after almost a year only one sister contacts me to see if I am ok. I had to endure this type of humiliation for caring loving my mum she lasted 6 months in a residential care prior deteriorated fast but I did it all for 6 years in total . I have no regrets except I wished and asked for help I didn’t receive any. I still this day have chest pain heartache and anxiety as mum was very hard to handle at times and could not afford too many home nursing options I did everything by the book. Finances everything by the book I hold everything at home. One day before my mother died my brother and wife turned up 6 months prior to her passing and told nurses how bad the place was it wasn’t true I had to go face the nursing staff and management and they never returned. One brother made it his absolute business to humiliate destroy my mums memory passing and funeral however resilience and right until her stone was placed I was put in a position of humiliation even at that because one sister never ever believed how Alzheimer’s can and does eventually take a person. It’s completely obliterated my heart these brothers and sisters none cared nor ever said thank u nor bothered to visit mum when she was alive . I’m left with a memory of hatred towards mum and myself which is somewhat not the way we were brought up however end of the long battle I hold myself up and with deepest dignity and just have had to accept their hostility disrespect and best I can do is some may have their own guilt to deal with I am not sure. I just know my mum would be horrified to see their behaviour and how they have let family destroy family. I feel for everyone and know in your hearts you are brave courageous loving kind people whom care for one of the most sinister diseases and it’s not easy my heart holds you high with respect
Kind regards
Mar

My mum was diagnosed with dementia 4years ago.She was spending most of her time with me at weekends, days off and holidays.She was getting really anxious going back to her home on her own and would contact me late at night to ask to come back to me. I was worried about her not looking after herself when she was alone despite Carers calling in to help. We decided she could come to live with me but to do so I would need to reduce my working hours. She would need to provide the wages I would lose or it would not be possible. Mum enjoys being here and will stay long term, no nursing home. My siblings don’t think I should be getting her pension for her to live here but she would go to a nursing home because they won’t give her care. They make me feel so guilty. Am I wrong to do this?

My sister whom lived with me had a stroke 3 maths ago her surviving next of kin would be her daughter which has elected to have her remain in a skilled nursing facility my sister wants to come home and the daughter won't allow it what can I do?

I find myself in a similar situation but with all the key players switched up. My Mum diagnosed in 2016 with Alzheimer’s is at moderate/late stages of the disease. My sister and I were not as involved as we should have been for the first several years, with my Dad caring primarily for Mum. We have a disjointed family at the best of times, which played into us not stepping in and stepping up sooner and more forcefully. My Dad (under the guise of protecting us) kept us at arm’s length. We knew we were out of the loop on the real progression of mum’s disease; we tried to support my parents the best we could through attending appointments when we could (when we knew about them) visiting and generally trying to make their life easier through the minimal connection we had. But it was Dad calling the shots; this is our father who we’d always taken our lead from and he just kept saying they were all good., everything was fine. Then a few months ago life turned us on our heads and we find ourselves in a situation we never could have imagined. Dad has many physical and mental ailments of his own, it became abruptly obvious that Mum was not safe in their home under dad’s care and she was removed by another family member and immediately came to live with me. Since then we’ve been thrown so many curveballs it’s become insane, lawyers, police and others are involved. My Mum is staying between my house and my sisters ... happily trodding along beside us wherever we go just content to be near her girls and grandchildren. It is the hardest job out there don’t get me wrong ... but she, my Mum (the one WITH Alzheimer’s) has been the relatively easy part of this new caregivers role. It’s been the pushback and grief over my Dad that has torn us up and worn us down physically mentally and emotionally. I’ve been so extremely frustrated, disappointed, and yes hurt, by all of the systems that have failed my Mum throughout this; the very agencies and systems in place that she’s paid taxes to that are supposed to protect her.
I do appreciate reading these stories of different perspectives and can see why maybe our case is a bit of an anomaly, and maybe why the systems and agencies are slower to step in as they are used to situations that are different. Bottom line - we are all here with these stories because someone we love (and SO many others we don’t know) are fighting a battle they never wanted to be in and we need to stand beside and in front of them to make sure they have their best chance at living THEIR lives out while carrying the burden of Dementia.
Post Note: I didn’t mention a key factor in why these stories hit so close to home. It has been Mum’s signed and appointed POA of Dad from 10+years ago that has us hitting a roadblock every time we try to move forward and get supports for Mum. My Dad has been hostile and nobody wants to make a call that goes over that signed legal document ... even when it’s come down to immediate personal safety concerns.

I can sympathise with the feeling as I too am my mum sole Carer despite having two siblings. I also live with my mum with my family and accept that my family will do more as we are there But we still need family time and I struggle to get any of that As even an overnight stay means list made for siblings etc. Mum I feel is still ok in the house but is that because we are there and the gilt I feel about her going into extra care is so hard

I feel your pain. I'm in a similar situation right now. Mam has been in hospital for 6 weeks with pneumonia, fluid on lungs, heart problems, she was diagnosed with alzheimer's dementia in oct 2016, re diagnosed with lewy body dementia in june 2017, man has 5 sisters, myself and son, I am her main carer, mam never wanted to go into a care home, I've tried my best, but now in hospital social worker is saying she doesn't think mam will get home, I'm really stuck and torn on what to do. My head is in bits, think her sisters want her in a care home, my brother doesnt get involved as doesnt like to see her this way, it's all the what ifs , the guilt, the sadness,
Glad your story worked out ok xx

I can sympathize with the writer, my wife has a raft of problems, dementia, Parkinson’s and extensive brain damage due to several strokes, it is remarkable that she does as well as she does. Since our GP sent her to a residential care home she has thrived and is much happier. I cared for her for as long as I was able until my health began to suffer but our son who lives in the UK, my wife and I are Swiss and live in Switzerland, has refused to accept the situation, he is by the way a doctor and was the first to diagnose my wife’s problem, he has caused more problems than it is possible to imagine. He accused me of mistreatment, theft (of my own money), of threatening to murder my wife and it goes on, even after the police and our social services have ruled his accusations complete nonsense. He brought a court case against me and when he lost that a second. A complete nightmare!

I found the original article to be a bit upsetting and also enlightening, as it brought back similar memories of my mother who has dementia.

As her health gradually declined (memory problems, aggressiveness, theft, agitation), I noticed thet our entire direct family abandoned her, that is to say my brother, his children ..... and even her blood related cousins who are still alive. I was left with the whole responsibility of dealing with this. Initially, through my lack of knowledge on the topic, I struggled with the whole issue of seeing Mum deteriorate and change so much. By early 2016 we were in a situation where a social worker assessed her and was talking about taking her in to care and having to sell her house to pay for it all. I was disgusted, although I have heard a lot of councils do this. I also found her GP not once recommended a professional assessment by a neurologist, although she regularly visited him to say something was not right!
At this point, I had finally managed to persuade her to sell up and come to Spain with me. We sold the house and moved her to Spain within 5 months, this period being the most stressful andtraumatic for her and me.
The first thing I did was take her to a neurologist for a full professional assessment and a brain scan. On the basis of this her meds were completely changed.
In fact, there was a noticeable improvement in her "behaviour" and I agreed to get a her a flat near the sea. With daily support and assistance from me, she was mostly okay. This lasted about 6/7 months, but once again her health declined and her behaviour included disappearances, false claims of theft to the police and locking herself in to her flat. I got carers in, but she kept throwing them out. Not long after, she went in to a care home. She adapted fairly quickly, 2 months maybe, and has been there ever since. They have auxiliary staff all day who are lovely people watching, caring, talking to the residents. There is daily entertainment morning and afternoon. There are classes to practice memory skills, weekly physio sessions, a doctor, three nurses. A lovely garden/patio for the summers, a library, a huge consevatory. It is a wonderful place.
Add to this she sees the neurologist every 9 to 12 months, and her meds are tightly controlled by the Spanish Health Service, well, it is the most relaxed I have seen her in maybe 10 years.
Oh yes! And it all comes in at half the price of a private UK care home.
What she had to go through, and still does has been very difficult for me. I am considered by those who know me as a bit of a tough guy, somebody who is really in control. I am fit, work hard on my in-laws property chopping wood, fixing roofs whatever at weekends. I work hard in my job.
Yet, inside I feel a profound sadness, sometimes anger at my family for the way they abandoned her. Anger at her old UK doctor, the council where she lived, even neighbours who once very friendly then shut their doors to her. I don'tt believe I will ever forgive my family for the way they treated her, branded her as a nutcase. I am not sure I will ever lose the guilt I feel for the times I became frustrated, exasperated and desperate at Mum and shouted at her. I just didn´t understand what was going on with her, I felt so impotent.
I have since learnt a lot about Alzheimers through seeing the illness in my Mum, through this website and through sharing with other families in similar situations.
On a personal level the support I have given to my Mum since 2014 drove me in to a deep depression. And here in 2020 while on the surface my business and life looks great to everyone, the reality is my business is failing and will shut down this year, and I have now been in therapy for almost 2 years. My partner has been amazing, never once losing faith in me, in this I am very lucky.
As I write, the therapy has helped immensely. I am for the most part getting back to my old self, beginning to enjoy activities again, I have even gone back to studying!
My partner and I have accepted that caring for our parents is an important part of our life. They gave so much to us, maybe we can give a bit back. Visiting Mum elicits a mix of feelings - deep sadness to see her so small and defenseless, but also joy at seeing her smile and the never ending hug I get every time I visit her.
The care home has been wonderful. They literally saved her, but it is fair to say they also saved me.

NB: I realise not eveyone can pay for private care, but in order for my Mum to be able to do this we obviously fund it with the house proceeds. But, there is a big difference on selling your property and being in control, as opposed to your assests being forcably sold and the proceeds going in to your local councils coffers.

Sorry to hear of your dilemma Janderhol. I was in a similar position when first turned down by CC when applying for CHC on behalf of my Wife Pauline. Detailed research led to me finding out about the Pointon Case. They achieved funding from NHS to nurse their loved one at their home. Details are on my website via the Link Page. This involved Alzheimer's Disease. I used this case together with professional assistance to win an Appeal & NHS were obliged to fund CHC for the rest of my Wife's life !
I am not saying its easy to get this benefit because its a struggle due to inadequate NHS funding. However with a fight & knowledgeable help its possible. The NHS must be persuaded to give people healthcare by well prepared applications along with a complex case argument. Alzheimer's Society & my website noted above are designed to provide helpful advice.
Peter Garside

It’s a sad world we live in! CHC can be farcical. I helped to achieve funding for a man that had devastating consequences after a stroke. After ten years in a nursing home it was deemed by CC that he’d improved and funding was withdrawn. He passed away 18 months later. I’m now in a similar position as my husband is in a special care unit with Dementia. Despite feeling and knowing this is a terminal illness I haven’t got the strength to go down the route to get funding from the NHS. It would certainly open the flood gates if one ever got funding for dementia and the Government and NHS know this.

I can sympathise with you as you took responsibility for your Mother's Long Term Care. Your family are no doubt busy with their own lives, & obviously too busy to be much use at caring. That's their problem not yours ! I hope relations improve in the future.
NHS have a benefit called "Continuing Healthcare". This is designed to enable people to have professional carers in the home , but if too advanced them in a Residential Home. NHS pays all the costs provided the overall situation is "Complex", & not just early onset Alzheimer's Disease with minor short term memory loss. If daily supervision is important then an Assessment can be arranged via the GP on request by a Power of Attorney.
The problem with NHS is getting an Assessment approved. Most people think this should be an obvious conclusion if you can no longer manage as a carer. However NHS appear to be rationing these benefits due to inadequate funding reserves. Naturally this would not be admitted but the number of seemingly valid cases not approved leads me to this conclusion!
The advice I have given the public since losing my Wife in 2016 is to get professional assistance & do not rely on your own expertise when Assessments are being made. My website on https://continuinghealthcare.wordpress.com/ provides free advice to all who are interested in how to achieve getting this hugely valuable benefit. Its not means tested so the family home is not at risk of being sold to pay for serious health needs , unlike the risk of care via Social Services & Local Authorities. NHS was established 70 years ago to look after people who have medical needs. Getting that care when its needed should be our right.
Best wishes. Peter Garside