My Parents – My experience.

Discussion in 'Welcome and how to use Dementia Talking Point' started by JAC50, Oct 2, 2015.

  1. JAC50

    JAC50 Registered User

    Feb 18, 2013
    I’m hoping this is posted in the right place.

    I lost my mother to Alzheimer’s earlier this year and my father to Vascular Dementia in August. I wasn’t aware they had acutely different illnesses and I wasn’t aware how different those illnesses would affect them and ultimately take them from us. I’ve been lurking on this website for a couple of years but never thought of posting anything until now. Why now, because I hope my experience helps others and because it helps me to unload a little. Having reread this it is a little candid so if end of life issues upset you then don’t read on.

    Mother was formally diagnosed with Alzheimer’s 5 years ago when she was 83. I say formally because the onset of the condition was so very slow that we simply put the forgetfulness and mild confusion, which had been happening for a good number of years previously, down to old age. In my clumsy inexperience I just assumed that most elderly people suffered some form of senile dementia and this is why my mother sometimes struggled to count the money in her purse or remember which of her sons had been to visit that morning. I now know that “senile dementia” is a most outdated term.

    Gradually the forgetfulness and confusion got worse and my father started to ask for help. He would claim that she was frequently verbally abusive, which was most unlike her so naturally we would be in denial, and did naughty things to spite him, like leave the door keys in the fridge or put salt in his coffee instead of sugar. Her Doctor set up an appointment with a visiting clinical phycologist who ran an MMSE test. She scored 26 out of 30 and was considered capable of staying at home with my father as her carer. The phycologist declared that in his opinion mother had Alzheimer’s, she had no other tests.

    Mother was prescribed a drug to help slowdown the progression of the disease. Whilst I am sure this works for some sufferers it didn’t for my mother as 12 months later her MMSE score had dropped to below 13. I will always wonder that if we had acted sooner, had her start that drug sooner and caught the onset of Alzheimer’s before it took a hold, whether or not her quality of life could have been improved and/or extended. I’ll never know.

    Eventually it all became too must for my father who was starting to struggle with his own health. She had become incontinent and he couldn’t cope with the mess and she had also become a danger to herself, frequently wondering off. With a heavy heart I put her in a nursing home, within months of her being there her MMSE score had dropped to 3. Fairly soon she no longer knew my name and was unable to hold a coherent conversation however she still recognised me as a familiar face and would kiss my cheek and hold my hand. She would smile, laugh, and chatter away about something completely random and I still had something of my mother.

    Over the coming months there were several occasions when she was close to death and we thought we would lose her but for some completely unaccountable reason her wretched and withered body struggled on. Every now and then she would bounce back to some form of normality, open her eyes, smile, utter a few words, take a drink then fall asleep again, but I still had something of my mother.

    Her final passing was incredibly traumatic. I had heard the expression “death rattle” before and had a fair idea what to expect however the true reality of someone you love passing before you in such a way is something that I will take to my grave. I was in two minds as to whether or not include this here as I am sure many of you have loved ones approaching that fateful moment however I wish someone had prepared me for what I witnessed.

    She struggled with every last breath and it was painful to watch. There is a part of me that wishes I hadn’t been there, there is a part of me that wished I could have taken her life sooner myself to stop her suffering any longer, but in the main I am glad I was there. I was there so I could say my goodbyes and tell her that I loved her. It also gave me the opportunity to weep without reserve and to close that chapter.

    My father’s story is quite different. He had suffered with a heart condition and poor circulation for many years however I had never connected this to dementia. Until a few months ago I didn’t know such a thing as vascular dementia even existed. He was also 88 when he passed away.

    18 months before his death he was a doddering silly old man that would forget the day of the week and occasionally do something daft like putting his sweater on back to front however he was still able to walk into town, draw money from the bank, shop for his favour brand of malt whiskey, and read the large print in a newspaper.

    12 months ago he became unable to care for himself and moved in with a family friend who became his carer. Whilst he lost the ability to do basic things like cook and clean he still knew my name, could hold a short conversation, loved to watch TV, he was still my old dad. One thing worth adding here was his inability to tolerate any alcohol whatsoever. Despite his protests and claims that the doctor had told him that a “couple of nips a day was good for him” we found a single glass would turn him into a very unstable and occasionally aggressive man.

    9 months ago he collapsed at home and was taken to hospital with a suspected stroke. We will never know what really happened to him physically and mentally other than this particular episode left him incontinent, unable to stand or walk, speak coherently, or feed & water himself. After 4 weeks in hospital he was discharged to a care home. I had lost part of my father and far too fast. I had accepted his dementia but had expected it to be a much slower demise, like my mothers.

    In August he passed away, I was at his bedside along with my brothers. In great contrast to my mother his passing was very peaceful, in fact quite serene. He was laid in bed asleep, breathing very slowly and getting slower until eventually it simply stopped. I was happy for him, he was a proud man and would have hated the thought of the indignity of being bedridden with some young nurse wiping his backside or the dribble from his chin.

    It was then I mourned the passing of both my parents. When my mother died it was the closing of a chapter however when dad died too it was the closing of a whole book. They are now buried in the same plot, they had been together through thick and thin for nearly 70 years. I like the idea of them being buried together, it wasn’t either of their requests as they never got around to making any, it was purely a selfish decision as it gives me a single place to visit whenever I feel the need.

    So, that was their story and if you have managed to read this far I would like to share with you some of my learnings from it….

    Sadly in this cost-conscious world of ours it is very evident that the health and social care system will do as little as humanely possible/acceptable and the old adage that “he who shouts loudest gets heard first” is very true. The competition for specialist support, nursing care, hospital beds, care home facilities, drugs and medication is very evident and if you don’t get in the face of those that grant those services you or your loved ones will simply be left until last or miss out completely.

    I wish I had the wisdom to take my mother to her doctors as soon as we saw those earliest signs of “senile dementia” - how I now hate that phrase. If I had taken her sooner and had her clinically tested and diagnosed we could have got her on medication much sooner. It might not have worked but at least I would have known I gave it my best shot.

    I strongly believe that my father’s rather fast demise was partly due to dehydration, something that manifested whilst in the care home. Two months before his death, whilst in their care, he became lifeless and permanently sleepy. A doctor took a blood sample and declared he had dangerously high sodium levels due to dehydration and that his system was shutting down. After two days in hospital on intravenous fluids he bounced back and was sat up in bed chattering away and, more significantly, was accepting drinks from a beaker.

    I am aware that dementia sufferers will experience a loss of thirst or the ability to swallow however that didn’t apply with him as he would always drink well when attended to by family. For the last few months of his life he lost the ability to give himself fluids (he couldn’t pick up a cup or put it to his mouth) and relied heavily on the care home staff to encourage and assist him to drink. Sadly that support wasn’t available frequently enough and the consequences were evident, dehydration exacerbates dementia.

    I can’t prove that dehydration either directly or indirectly brought about an early death however what I can say as fact is how the care home told me “they had insufficient funding and therefore insufficient staffing levels to give him the assistance he needed”. The nursing records kept by the care home record that at the very minimum they would attend to my father once per hour, however regularly this was recorded as between 1 ½ to 2 hourly intervals. So, if they didn’t get him to drink on the first visit then he could be without fluids for 3 or more hours. A basic and very simply human need, yet one they found so difficult to provide him.

    Families should also be aware The Liverpool Care Pathway. I am not suggesting this was deployed in my father’s case however it certainly rings true.

    I repeat – he who shouts loudest gets heard first. Don’t let the inadequate health and social care system affect someone’s quality of life. Don’t always accept the first answer as being the right answer as frequently it’s not. Don’t accept Social Services first offer of a nursing home location as it is invariably the cheapest they have available – push for somewhere that suits you and your loved one. Help and support is there if you create enough noise. I just wish I had known this before.

    On a personal level I am now going to do a few things…

    1. My wife and I are going to give Lasting Power of Attorney to both of our children now so they don’t have to go through the same red tape nightmare with social services, banks and pension companies, as I did with both of my parents.

    2. We are going to write wills and include end of life wishes for what happens before and after death. Don’t leave it to your children to have to decide for you whether or not they should sign a DNR (Do Not Resuscitate) or what happens to your sad old bones after the fact.

    3. I am now going to enjoy the rest of my life without worrying that my parents didn’t enjoy the last of theirs or that I could have done more to make it better. I hadn’t realised this until they both died that every day I would feel a sense of guilt if I hadn’t been to visit them instead of, say, going on holiday or out for dinner or to a bar. With their passing came a great sense of relief and release and there is no shame in feeling either.

    Finally, whilst dementia is a cruel disease my parents seemed happy in the oblivion in which they lived. Apart from a small number of medical traumas, which I am sure caused them some discomfort, they were generally comfortable and even towards the end they would smile and laugh and chatter in an incoherent but positively engaging and almost childlike way. Enjoy every moment they have left, not just for them but for you also, but do remember you have a life too and they would not want you to suffer their illness. Easy to say, I know.

    This turned out to be much more than I set out to put in words but if it helps someone then it serves a purpose.
  2. elizabet

    elizabet Registered User

    Mar 26, 2013
    I have become an orphan at 60, after my Mother died in 2013. Sadly I was not there at her end, mainly because although she was admitted to hospital with a chest infection she was stable and breathing with out oxygen and I took the line she was safe there . However, overnight she contracted a hospital virus and was dead the next day as her system and heart could not cope . I was over 250 miles away with my own family. I felt I had let her down at her very end .
    Neither my Mother or myself were with my dad when he died in hospital, as we arrived too late.
    I am determined to live my life to the full while I can. My husband has recently retired and we are off seeing the world and enjoying experiences, things time never allowed during working days.
  3. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    I would like to offer you my sympathy at the loss of both your parents within such a short time, and both to dementia.
    Please don't be hard on yourself about not recognising what was happening in the earlier stages, or not knowing the 'right' thing to do. The last decade has seen far more publicity and education about dementias, but unless you have come across it with someone close it can be a big unknown.
    This forum, and people like yourself being frank and open about their feelings and experiences, can make a difference.
    In my opinion there is nothing more you could have done, given the knowledge you had at each stage -- hindsight is a wonderful thing they say. I believe it can be the cruellest thing sometimes.
    Your parents are now at peace, and their remains are close to each other, which is how it should be, and of course you should be able to visit them together! And you have learned, and are teaching others by your post, to put things in place now, to spare your children in the future.
    There are as many kinds of death and ending as there are people dying, and some of them are so hard to accept and come to terms with. You have my sympathy regarding the traumatic end of your mother's life. I could say 'it was a tiny drop in the huge ocean of her existence' or any number of other attempts to console you, but you will arrive at acceptance in time, and I hope it is soon.
    Thank you for your post.

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