Dementia Support Line
Real stories
Tracey’s story: ‘Caring for a person with dementia can be all-consuming’
When Tracey Clayton’s aunt was diagnosed with dementia she went through stages of denial and confusion. Now, she explains what she learned along the way.
Tracey was the primary caregiver for her aunt for nine years
When a person who is dear to you first experiences memory problems, you will probably look for a rational explanation.
After my aunt first forgot about our lunch appointment, I thought it happened because she was distracted. When the same thing happened for the second time, it became weird. But when she left home with the stove still burning, that’s when my alarm bells really started ringing. I decided to finally take her to the doctor.
First came denial
Once the results were in, I was shocked and terrified about what stood in front of us. The doctor’s words sounded so chaotic in my head when she talked about Alzheimer's Disease, its symptoms, progression and the need for constant care. When I came home, I decided to read as much as I could about this condition.
Caring for a person with some form of dementia or Alzheimer’s can be all-consuming. It requires a lot of your time, dedication and patience. This only gets worse with time, as my aunt's functional, physical and cognitive abilities began to diminish.
You need to be prepared to experience high levels of stress and even depression, because seeing someone you love in that condition, and neglecting your own health and personal life to provide them with care can be overwhelming. Your loved one will sometimes behave as an entirely different person, and that can be very painful. That’s why it is important for you to have support too, in the form of family members, a partner, a friend, or even support groups.
Overcoming the challenges
Taking care of a person with Alzheimer’s disease or dementia brings many challenges that develop alongside the condition. There isn’t a universal path to follow, each person’s condition progresses differently. It can help to prepare, but there’s always a new challenge to tackle.
With my aunt I overcame communication troubles by using simple words, and trying to get her to focus before I spoke. Bladder troubles were difficult too, but after we established a routine of taking her to the bathroom it became easier.
The hallucinations and delusions were the worst part of the experience, but it is important to try not to argue. Sudden changes in mood and outbursts of aggression need extreme patience and understanding.
A life-changing experience
The most important aspect of providing care is keeping your loved one safe and limiting their chances of wandering off. I gave my aunt an identification with address and phone number, and I kept the main doors locked especially during the night.
I had been the primary caregiver for my aunt who lived with Alzheimer’s for nine years, and watched her fade away bit by bit. Needless to say, this was incredibly difficult for me, but I always tried to remember that it is difficult for her too.
It's essential to know that you won’t come out of this experience the same you were when you went into it. But if you don’t let the disease consume you, the fact that you were kind and good to a person you love in such difficult times should be a sufficient reward.
HaleyPetter39
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HaleyPetter39
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Live in Carer Dementia Training Romford
Debbie Buckton
saysI was a care manager for twelve years until three years ago. I could see my mum who suffered with rheumatoid arthritis struggling with my dad who was diagnosed with dementia six years ago,his memory was deteriorating fast and it was so hard for my mum to come to terms that she was losing her husband of fifty five years. That's when I gave up my work to look after them both. In February 2016 my dad attended the day centre as normal and my mam went into hospital, while she was in there she became really unwell, she passed away the following week with sepsis.
That day we returned home from the hospital waiting for dad to come home from the day centre it was heartbreaking to see him not knowing that his wife of fifty five years had passed away.
I decided to stay with dad to allow him to stay at home.
It's nearly two years on now and it still breaks my heart, it's so hard for me but I have a lovely family who help and he going into respite also visits a day centre three times a week. It hurts when he doesn't even know who I am but I know who he is . He's my dad my life .
Caroline Davies
saysIt is unfortunate that this account uses the terminology of sudden disaster for something which develops slowly but surely! Here we apparently go from forgetting a few things to a GPs verdict and the world falling apart! This might be the case for someone who already has experience of Altzheimers but for those who have not that isn't really how it happens and it is not actually useful to present it like this I would argue. Rather the inexorable progression has a profound impact on the lives of those concerned - hence why many relatives decide to walk away... Readers should be aware that this a retrospective account. The burden too often falls on those brave enough and decent enough to take responsibility - it would be so much better were it shared so as to give carers respite. Perhaps the society's website could feature such arrangements and how they came about?
Patrick Hawkins
saysThank you Tracy for your blog.Your description and story of living with dementia
in Alzheimer's is spot on.Being an obviously caring person you must have done
a wonderful job.May I say well done.My wife was diagnosed with dementia in Alzheimer's in 2012 and, since that time and to the present, I too have witnessed the
horrible progressive nature of Alzheimer's.It is so cruel,so sad,and distressing to see a loved one's degeneration,initially having to take away their liberties,e.g.going shopping alone,banking,and everyday household tasks,e.g.cooking,ironing,become too dangerous for the unfortunate sufferer.The understandable frustration of the sufferer manifests itself in anger attacks.Then once the sufferer accepts,to a degree,the ability to eat with cutlery,toiletry needs etc etc all need time,patience,and understanding.Very hard at times!Tracy,your story is so true.
The good news is that the ALZHEIMER'S SOCIETY have been so helpful in providing advice and a very important listening ear to the Carer.Also brilliant in initially sorting out Attendance Allowance paperwork(31 pages now!!)and a rebate from the Council on Council Tax.Thank you Alzheimer's Society.This helps to go towards the considerable Care and financial costs involved to cope at home with the help of self-appointed Carers and helpers.Having only one daughter,who works in Care,50 miles away means effectively,other than the help of some kind and caring neighbours you manage to cope most of the time.Sometimes very depressing and lonely for the Carer.
The savage Government and local Council welfare and social cuts have made life far more difficult.I could write an essay on this subject just how much they impact on those suffering in the community and their Carers.That will be another time.In the meantime I will consider joining all the 38 degrees Petition's relevant to Social and Welfare Care which has been going on for years under ALL Governments.
Clive Kirkman.
saysThanks for Tracy being brave to talk about the difficulties of livin with her Aunt's Alzheimer's as l believe it only by sharing these experiences even after the event. With our it was not so bad as she had the ability to laugh at herself, has understanding doctors and was Aricept which slowed her decline and she till over 91 years although in last she told wife was not worth living. However I also realise she initially did not give up, kept playing patience on her own and continued with her needlework and knitting. I now realise by continuing to have these activities the decline was delayed. I take as privedge now through my experience if being a volunteer visitor in care homes that I am aware and now part of the fund raising day on 8th December. Best wishes and good all those involved not forget the staff at the Alzhiemer's society who set up this event. Clive.
Peter Garside
saysCongratulations Tracy for all your love & attention to your Aunt's needs . I had a similar experience with my late Wife Pauline for around the same time . Following her death last year I launched a Memorial website to help people obtain NHS Continuing Healthcare benefits. This provides non means tested finance to provide long term care at Home , or in a Nursing Home if this becomes necessary .
Full details are on https://continuinghealthcare.wordpress.com/
Once obtained this made a huge difference & reduced my stress providing 24/7 care . Pauline was nursed at our Home as was her wish for the rest of her life.
Best wishes to all Carers.
Peter Garside
Patrick Hawkins
saysSo sorry to read your story too Peter.It seems nowadays unless you are in a final palliative care with only very limited life expectation local Councils deny Continuing Care assistance.I have pursued this Benefit for both myself and with others who are met with a total blank rejection!G.P's also seem unwilling,being too busy,and knowing how futile it is to take up the cudgels.It will need much more publicity to make this Benefit known and Petitions and representations to M.P.s,Councillors,
etc IF anything is to improve.
Peter Garside
saysThanks Patrick . I have heard it is CCG practice to reject 7 out of 10 Assessments each week . If 5 go away & 3 launch a formal Appeal & win then they can avoid 50% of total claims for Care . This may be exaggerated & would certainly be denied to avoid adverse publicity !
My advice on the website is to Appeal any adverse Decision , & get professional help from an expert . Contact details are supplied for assistance.
I am doing my best to publicise this NHS Benefit which gets very little advertising . Best wishes. Peter Garside
Patrick Hawkins
saysThanks so much Peter for your comments and advice.Appreciated.
Cath L
saysIt is your local heath board, not your local council that controls the continuing healthcare budget......the criteria is ludicrously complex and difficult to negotiate.