Real stories

‘Bonnie is my best friend who deserves the best quality care’ - no respite during lockdown

I have the different experience of being a professional carer, with qualifications in dementia care and alzheimer's disease, as leader of the department and I adored my work. I loved the people I met, and had the pleasure of getting to know, and although this was towards the end of their lives, mine was the best job in the world. Sadly, I can see the pressure that caring alone can do on the 24/7 basis, with no assistant to step in when you get tired, and no break for a walk in the fresh air, either. Just to gather your thoughts about what you'll have for tea, or if you'll remember to give a friend a call who keeps getting put to the bottom of your pile of important things to remember. I can see the pain of exhaustion, and hear what happens when things go wrong. Changing the way our care system works is something I cannot really contribute to, as I am just one person, just like you. It must be possible for the system to be changed, when so many people are saying the same things. Yet, here we are in a civil society of 21st century Great Britain, and people are falling apart from the strain. We can all say how well we cope, how much we love having the togetherness and being there for each other, mostly on a "In Sickness and in Health" status, which marriage truly means. But, it should not mean this!! Loving someone can often mean letting them go, and often the care-home is the place to go. It's horrible. I know because I worked in one. BUT, I don't mean horrible care-home, I mean the break-up of a couple pulled apart by this cruel, evil disease when one half is faced with the horror that this disease can bring to the other half. Two lives destroyed in a blink of an eye, 50, 60 or even 70 years together, and then ........... It could make you shudder to think of it, given too much thought. Our Care System should not involve anyone selling their property to pay for their care. Otherwise how will the people who do not own property ever be cared for?!! The World is not an equal place, nor are anyone's lives. How one person lives their life is a matter of choice, and not everyone wants to buy property. Or, has the money to do so. I feel that there is sufficient people with this illness to warrant it being financed by a system that works for the people, not against them, as it currently does. It needs to go back to the drawing-board, and to start again. Destroy the current model which is broken, and to begin afresh with new ideas, new support & education, new financial system for which research can add to it too by employing scientists to dig deeper into the causes and effects. Developing treatments, preventatives, and cures should be simple if finance were not the big hiccup to it. I agree with keeping people safe and normally for their own safety and those closest to them. Allowing a free run would not be an ideal solution for confused people, living in a fearful way who don't recall meeting the same person the previous day. Music is a wonderful tool for people with this condition, it can soothe, it can help with memories, it is happiness-drug, and we all enjoy it. Dancing can be seen in people who never seem to do anything but shuffle. It can be amazing to see, and quite wonderful. The tables if turned around, would help show any committee or chief of this or that, just how it feels to be worn to threadbare by someone you love. If they had to face it, day in and day out, they would know. But, that is what's needed here, to help gain the financial backing required to give Good Quality Care & Support. I do go on, don't I, and I apologise. :)

I believe that as soon as Alzheimer’s is diagnosed there should be a medical team to be able to spend time with the patient and family. Guiding the family/friends to be able to get to terms with the illness. I did not want to go down with Alzheimer’s but unfortunately I have got it and gratually it is getting worse. Regards I hope that I have not taken up your time. Regards mrs Huseyin

Feel for you and all the other Carers and families of loved one's going through the same. There are so many of us. We have two Mums one with vascular dementia one with Lewy body . Covid came and added more pressure on Carers and Dementia Patients. It has highlighted the care system enormously, It is not your loved one you are caring for that has exhausted you beyond belief emotionally and financially it is the system.
It is called the Care System, the Government needs to make this a priority and listen to the people who do Care and help us now and for the future.

I am caring for my husband he has dementia and is fast getting worse since this lockdown began , I am lucky as l do get quite a bit of support from social services in fact I say some times a bit to much they keep asking I if I want to start taking things further as my husband has a short fuse these days he gets very angry so I just try to change the moment .

I have read many of the accounts by wonderfully caring and compassionate people and can identify the problems they and their loved ones endure. I too became exhausted looking after my husband Terry with PD from the year 2000. This has a significant cognitive impact in the later stages, which has speeded up during lockdown. His care was undertaken by a reputable Nursing home in 2017 after nearly dying with a pulmonary embolism. This is steadily taking all our accrued savings until we get to the statuary £23000 when we might! get assistance. Apart from this worry I have campaigned through Alzheimer’s and other voices for access to our loved ones during this last year which has had a horrendous effect on my husband. I have been told that things have changed within the care home system with exercise and stimulation being practically absent alongside minimal opportunities for visits. Meals and meds are the basis of care now. Plus on line contact- what a joke ! Touch is the most important part of any visit.
The new emphasis does seem wrong and illogical even though the one carer access is now allowed one wonders why this was stopped in the first place.
I do admire those taking the brunt of the caring duties like David, I hear your voices.
I look back at the time when I was in the same position and I recognise how much more the government could have done to help with prioritising extra funding and respite.
There is a lot to be done on all fronts to look after the elderly, who have contributed so much to the life of this nation and world we live in. I will never stop speaking up about this.

I am saddened to read of the struggles that so many people are having caring for family members with Dementia..My sister and I had to put our dear 92 year old Mum into a Nursing Home after a fall last October which seemed to accelerate her Dementia..We lost our wonderful Dad 94 in December 2019 and like others never ever imagined our Mum would get it for she was the brightest fiestiest Mum ever a marvellous cook/bowls player and hub of the family...Although she is self funded and her House will have to be sold soon to pay for her care we know that she is very happy extremely well looked after and dearly loved by the staff.
We know as her daughters in our late 60's/early 70's that the funds will enable her to end her days as she so deserves and we cannot get too bogged down with the rights or wrongs of it as our only concern is her well being...I therefore do hope others will not feel guilty about considering a Home for their loved one to make life easier for them as the Carer. I would feel guilty not having helped Mum onto the final stage of her life where she is happy and thriving...Dont let guilt cloud your decisions as it is a very heavy burden to carry around..

I am a carer at 70 years of age for my husband with vascular dementia & my virtually housebound daughter with ME & FND. Whilst doing my best to cope now our chief concern is the future. Planning for this instead of leaving things to become critical seems to be impossible. My daughters mental health is worsened by being unable to see how the future will be secure for her.
I am a resourceful individual supported by my local Carers association & the really helpful Crossroads who give me a 3 hour break once a week. This gives me the opportunity to take my husband out for a trip together too. Additionally I have been in hospital twice during the pandemic once for a broken wrist which needed to be plated & screwed after a fall & then an overnight stay for a suspected cancer operation which fortunately was a negative outcome.
The pandemic has caused a real challenge.
I am determined to offer my husband & daughter the best care possible. 3 years ago we did a massive down size to an apartment to make it possible to manage more easily & I am so glad we did this as both of them have recently deteriorated.
We keep smiling & managing as best we can to create a positive outlook for the situation we find ourselves in.

My husband was diagnosed with early onset Alzheimers Dementia in 2015 and I am now his primary carer. Before lockdown he would attend a Day Centre which meant I was able to work to support us financially. During lockdown all services were withdrawn and I subsequently gave up working to care full time. Its hard but I wouldn't change a thing. Carers allowance is not enough to be a viable financial support and I am now faced with the decision in selling our house so i can continue to support my husband full time. Emotionally this is devastating as his memories and familiarity are here.

I think you are all absolutely marvellous. I feel like I’m failing when I read these lovely stories of endurance, I am a disabled person, my husband was my carer. He was diagnosed with dementia in 2016 . I’ve been caring for him ever since. We had to move house because we had acres of garden and were quite remote. He became unable and unwilling to do any gardening. I sorted the move out and then
Found he hadn’t been on top of any paperwork for years, it was a horror story. Our sons are abroad and the one child in England is not interested in hands on help.
Lockdown has been disastrous for us both. He has become much more confused , despite my best efforts trying to keep him stimulated and doing exercises with him. I’ve now found out that I have a third recurrence of Bladder cancer and I just don’t know which way to turn. Ive put off any surgery for three months hoping Covid would abate and my son could help , only to find that he would have to spend 10 days in a hotel.
I now sometimes feel like jumping off a Cliff, It would be easier. It seems that every way I turn is a dead end and another problem looms. Normally I’m a very positive person and used to dealing with a lot of issues all the time . Now I just feel worn out and worried to death. It is so wrong that the Government let willing carers struggle incessantly trying to hold it all together.

David. I did similar for my wife until her passing 2 years ago. I am now driven to try to help carers like you by pushing for system improvements. You can get support for respite and should ask social services for an assessment. You would then possibly be able to organise a companion who would stand in and give you a break on a regular basis. Perhaps even daily.
I wish you all the best and should you wish a chat at anytime dont hesitate to pm me

I am the sole carer for my wife who is 64 and has suffered with Alzheimer's from 2014, it did take 4 year to get a diagnosis which in itself was a huge strain but added to that has been the last nearly 3 years and lockdown.
I now feel totally empty and apart from one agency who have been fantastic the rest don't seem to care as long as she is being looked after at home.

I so admire David for his devotion and care of Bonnie. I’m a full time carer for my mum, I’m 64, she’s 88. She was diagnosed in 2015 with vascular dementia. I do this alone. My family either don’t care or live in other parts of the country. I’ve just had a gallbladder removal op, 7 weeks ago and had domicillary care to care for mum while I recover, which has reduced now to once a day in the mornings. I’m exhausted, physically and mentally. I’m getting phone counselling one hour a week which is a great help, I’m also an artist and poet which is a good outlet. Lockdown has taken its toll because I used to take mum out but can’t now. Her moods have gone haywire. I get respite five hours a week but don’t have much energy to go to places and with restrictions in our part of UK, it’s difficult, so I rest while the carer is here. I have to pay for care from mums attendance allowance. They do a brilliant job, but it annoys me that mum and other people with dementia should have to pay.
What can we do?? I’m losing mum daily but also losing myself ....

This horrible disease takes hold very slowly and not always detected. Those who try and keep them at home , take on an enormous task. More help should be given to keep these people at home with their loved ones. But loved ones need more support and respite care occasionally for their own mental health and physical safety.

Hello Christine & Anita
I am aware that provision is really different across the UK but I do not know what the solution is. I have worked in nursing & social care both in the NHS & elsewhere, the system is failing all taxpayers & their dependents but it is also failing those who work at the sharp end & I literally cannot work here anymore. I wish the whole system was different but it is not & of course I most wish it for those people who might be my patients.
Sincerely
Georgina

I so deeply feel for David, caring for Bonnie so devotedly. My own wife was diagnosed with Vascular and Alzheimer's mixed dementia in 2013. For years she held her own and I also believed she would never go into a home. The bitter truth however, is that I had three emotional breakdowns in the last eighteen months. The most recent was March. Total. She had to go into respite for the five weeks I was out of action. On my return, I was gently advised to leave her undisturbed in her new safe place. I've visited, (outdoors only of course), and she's always pleased to see me, but she is contented where she is now. The Staff are all wonderfully kind and caring. They have had zero Covid cases through strict preventative measures and close monitoring procedures. I have improved in my physical and mental health and I wish now that I had listened to experts and family years ago who advised me to be sensible and not try to go it alone! I was never as successful as the Care Staff (probably because I was always worn out and desperately short of time and seriously lonely, even though she did attend a day centre once each week). It was kinder to my Wife to entrust her to the professionals, as I now clearly see. They have time and experience to involve all the Residents in crafts, games, exercises, and chat, that I didn't have. They are never too tired to listen. Someone is always awake during the nights, to watch over her and two of them to lift her, instead of me struggling on my own to get her to the toilet in the middle of the night. I love her and always will, but love and capability are two entirely different attributes. I am so very grateful to "the cavalry" for coming to my rescue