Remember that song... "Nobody Knows What Goes On Behind Closed Doors"? Well, it's often true. Outside the home, people might appear to be all sweetness and light but inside, after they have taken off their masks, they may show a darker side of themselves.
As regular readers will recall, my old friend Bert has had a hell of a year since breaking his hip and spending a month in hospital. He is now pretty much housebound and still sleeps downstairs in his front room because he cannot negotiate the steep staircase.
Bert used to be a much-loved regular in our local pub. He had a sunny disposition and never complained about his lot in life. Everybody liked him from the youngest drinkers to the oldest - though none were older than him. Sometimes when he walked in, other drinkers would chant "Bert! Bert! Bert!" which slightly annoyed him if the truth be known but he never complained.
See him now sitting sideways on to his TV set which is always tuned to an unpleasant right wing TV channel called "GB News". He's 87 and I swear he is becoming slightly demented. He forgets things like how to answer the telephone, old pub regulars' names and he often stumbles in the middle of sentences, forgetting words.
Bert is fortunate in that his youngest son, Philip has become his unpaid carer. Philip is 53 years old and a bachelor. He usually sleeps at Bert's house and sometimes over at his mother's house which is three miles away. Philip doesn't have a regular job and he seems a pretty gentle soul. I learnt recently from his mother that as a young boy he was sexually abused by his step-grandfather. Though I don't know any of the details of that abuse, it seems to me that it probably changed the course of his life.
Last time I visited Bert - earlier this week -he was being very nasty to Philip - accusing him of taking Bert's money and drinking too much. Recently Bert's other son has been successful in securing a government "attendance allowance" for his father. This amounts to £108 a week. The idea is that the elderly and the infirm can buy in some assistance. Often this help is given by family members who would otherwise be unpaid.
Even in my presence Bert was lashing out at Philip about this money. I told Bert that he was very lucky to have Philip around to help him and regarding the weekly money the clue was in the name "attendance allowance". It is meant to pay people who attend to his needs and for a minute or two Bert seemed to accept this idea. However, five minutes later Bert was again lashing out at Philip over the same matter.
He also accuses Philip of ripping up important papers.
Bert's ex-wife sometimes talks to me over the phone and she confesses that she has started to hate going round to what was once the family home because Bert has become so nasty and accusatory.
As I said before, I think Bert is becoming demented. The old sunny character has almost evaporated and in its place I am increasingly hearing a cantankerous, confused old man who is losing his marbles and lashing out at the people who still care for him. It would not surprise me if in a few weeks he started lashing out at me too.
Old age is rarely about sitting on a verandah in a rocking chair while looking west towards a golden sunset, recollecting the old days with a smile while perhaps humming Mary Hopkin's song, "Those Were the Days". No. It is seldom like that.
As you may remember, I have been heavily involved with my mother's care as she sinks further into dementia, and, YES, it sounds like Bert has entered that awful country Dementia too. Being accusing and mean to the main caregiver, and paranoia about people taking property and money or doing other nefarious things, is common. I feel for Philip and hope that the abuse unwittingly being heaped on him by his father will not permanently damage him. Bert needs to have other caregivers to give Philip a break, but he (Bert) will probably resist that help. I say "unwittingly" because it's the disease, not the person, especially in this case as you note Bert used to be a pleasant person. I am so sorry to hear this is happening. There is no reasoning with a person with dementia because they do not have the ability to follow logic anymore. It's not a matter of "won't", it's a matter of "can't". You will only drive yourself crazy trying. Lord knows that has not stopped me from trying, but I have been able to at least REDUCE my attempts to get my mother to be rational. You are right that Bert may soon lash out at you too, but at least you can leave. Philip is the one who I worry most about in this situation. People were not meant to be full-time caregivers for this kind of disease. Even paid caregivers have regular time off. As Bert's dementia progresses, his care will increase. There's no improving or getting better; it just gets worse. I don't mean to be depressing, it's just a fact.
ReplyDeleteMay I also give you something to think about: you may be able to help Philip immeasurably by continuing to visit his father, even as it becomes more and more uncomfortable. My mother's friends have all fallen away except one, whose husband had Alzheimers so she understands what it's like. Even an hour for a caregiver is a godsend.
ReplyDeleteDear Jenny,
DeleteThanks for these reflections - based as they are upon sometimes painful personal experience. Maybe it is selfish of me but I do not wish to get too embroiled with Bert's situation - just weekly or fortnightly visits. However, next time I see Philip I plan to share phone numbers with him so that he has someone outside the family who can listen to him and provide moral support - like a release valve. I sense that Bert could push him to breaking point.
Kind regards,
Neil
Quite understandable about maintaining that boundary - and I see a weekly or fortnightly visit as being quite frequent, to be honest. It's more than my mother has received. Providing a listening ear is a vital support as well, one I couldn't have done without. I'm glad you understand how you can help and are willing to do so.
DeleteThat's so sad. Dementia often seems to have that effect on people (anger and lashing out) and sometimes it seems like they've had a personality transplant. We heard that my mother in law was really mean to her husband Lou the last couple of years of her life. He had the patience of a saint and never lost sight of the fact that it was the dementia talking, not her. I feel sorry for Bert's son, having to deal with that.
ReplyDeleteBert's son is not the most "together" or patient carer and he never asked for this to happen.
DeleteIrrationality is difficult to deal with for family and patient. Nothing seems to bring any break.
ReplyDeleteYou are right there Red. I doubt that it will ever get better. No magic wands.
DeleteBert would seem to be well into dementia. I hope Phillip is able to blame the disease for his father's behaviour, though I am sure that regular attacks impact a person even if they know it's delusional.
ReplyDeleteIn Australia you, a carers allowance is allocated to a person like Phillip. I think it's about $300 per fortnight, extra funding can be allocated for paid carers and domestic help.
I changed my mind about how to write that and didn't edit fully. it should be "In Australia, a carers allowance..."
DeleteBert could not live independently any more. He needs Philip's support. Paid carers have so little time to give before they move on to their next appointment.
DeleteEveryone who can visit Bert, should visit Bert, if only to give Philip a break.
ReplyDeleteSadly, the friends he had seem to have died or drifted away. I am the only one left.
DeleteWell, good on you for visiting then; I imagine Philip appreciates even a small moment away.
DeleteWe have what is called a Carers Allowance which is the same rate as the Old Age Pension. I am sure you would have similar and it sounds to me like Bert's son is entitled to it. It sad to see someone fade like that and even harder with the mood changes and clearly anger.
ReplyDeleteThe attendance allowance is paid into Bert's bank account when it should have probably been directed to Philip.
DeleteIt does sound as if he is becoming demented. If he begins to lash out at you will you still visit? I know I wouldn't as I am too easily upset by such things.
ReplyDeleteI don't know the answer to your question Elsie.
DeleteSounds just like my older brother, he lives alone, another brother comes to visit and ensures all the bills are paid, recently DVLA took away his licence, which he blames younger brother, who read the letter and asked for the car keys, it was done through the doctors who decided rightly he was unfit to drive. It's so sad to see such a lovely brother turn into this angry confused man.
ReplyDeleteSounds like your younger brother deserves enormous credit. I trust that you articulate your moral support.
DeleteThat is a desperately sad situation for all involved. There are far too many families suffering the effects of this horrible condition that robs of them of their loved ones whilst they are still living.
ReplyDeleteAnd of course the transfer to residential care is fraught with difficulty which has big financial implications.
DeleteSadly it does seem that Bert is declining into dementia. How sad that such a sunny personality is being overtaken by the unpredictability of the disease. My sympathy is with Philip, who has to stand the brunt of Bert's decline.
ReplyDeleteMy mother-in-law suffered from dementia for the last few years of her life and my father-in-law looked after her, but arranged for as much help that he could. She would go to day care once or twice a week and FIL would go off to meet friends. I have to say that MIL was most unpleasant woman and she was frequently extremely nasty to me (I'd married her darling son), but after she was diagnosed she became a much better person!
Sounds like even Princess Anne would not have been good enough for her darling son.
DeleteI have been fortunate in my older years to have very little personal experience of people with dementia. My parents were sharper than I ever have been when they were in their 90s. However when I was a child a lot of people "in our road" (a term one doesn't hear these days) had "senile dementia" as it was called regardless of any medical diagnosis. One got used to it and I can recall even now the people who became very "gentle" and those who changed into quite unpleasant people. I often wondered whether the underlying personality of a person came out when they got dementia. I have absolutely no medical knowledge on which to base this statement but more recently those I've come across with Vascular Dementia seem to display temper when it was not an obvious trait beforehand.
ReplyDeleteI don't think the "new" demented person reveals the previously hidden being. Certainly not in Bert's case anyway.
DeleteI think Philip needs your visits as much as Bert. What jenny says is spot on.
ReplyDeleteI plan to give Philip a bit more support but I am sorry to say that I do not wish to get over-involved.
DeleteThis is quite the sad story. Your last line in your post is apt: "Those were the days. It is seldom like that." As I get older, and I see people and families going through dementia it gives me thought to what will happen in my case. I had an uncle who was the most gentle and affable soul, but when he got dementia he became an angry and mean person.
ReplyDeleteIt definitely sounds like there's some dementia creeping in. Bless you for standing up for Philip and helping Bert to glimpse reality, at least momentarily. I am sure your presence does them both a lot of good. I think some people going through ill health often wrestle with anger, a response to the loss of control in their lives.
ReplyDeletePerhaps a doctor could prescribe medication that would ease Bert's anger. Old age can be the cruelest thing. As my mother used to say, "Dying isn't the worst thing."
ReplyDeleteI try to put myself in other people's shoes. Putting myself in Bert's shoes, where now I am unable to get around and confined to a chair all day, I can see how he might get cranky, stew on insignificant things and lash out at others. It doesn't make it right but makes it understandable.
ReplyDeleteWhat a sad situation but I know that many have that in their future. My Dad had Alzheimer's but we were "lucky" that he was a quiet, calm patient. He and my Mom both lived in a nursing home as they were not able to manage at home. Has Bert's family reached out to doctors to help? Maybe there is a medication that could help?
ReplyDeleteWhat a sad post YP. I like Bert in your previous posts about him and how he voted Labour.
ReplyDeleteTiny bit of advice , from someone who has been bitten, perhaps remove some of the more personal aspects of your friend’s life here
ReplyDeleteXx
I would rather be dead than have dementia.
ReplyDelete