A different blog from normal, not really related to Just-Bea at all but it is related to me and my Family, therefore it has to be relevant to Just-Bea!
Am not sure why I have chosen today of all days to write about Dementia. Especially our story, ultimately my Husband’s. It has been on my mind that perhaps it’s too personal to put “out there” but we aren’t the only ones going through it or something similar. Sometimes it’s just nice to know you aren’t on your own.
First of all an explanation on Dementia from the Alzheimers Society:
“The term ‘dementia’ describes a set of symptoms which include loss of memory, mood changes, and problems with communication and reasoning. These symptoms occur when the brain is damaged by certain diseases, including Alzheimer’s disease and damage caused by a series of small strokes.”
My Father-in-law has been diagnosed with Vascular Dementia:
“If the oxygen supply to the brain fails due to vascular disease, brain cells are likely to die and this can cause the symptoms of vascular dementia. These symptoms can occur either suddenly, following a stroke, or over time through a series of small strokes.”
Back in September of last year my Father-in-law (FIL) was officially diagnosed with Dementia after being admitted to Hospital for a routine operation. For other reasons, the operation did not go ahead, he developed an infection which led to him suffering with Delerium. An horrendous time, not just for FIL but for the family. We visited the Hospital every single day, we could walk to the ward blindfolded. In our naivety and optimism we believed he would return to ‘normal’ (more of normal later) even though the signs of forgetfulness had been in evidence for a couple of years.
We learnt to accept the smell of the different parts of the Hospital and the wards. We saw patients come and go and still FIL remained in the ward. One week short of three months in total! It almost broke us, exhaustion was the least of our worries. We barely saw the children, we daren’t even begin to consider what we spent in car parking! My work took a battering, our children’s diet, after school activities took an even worse battering. HOWEVER, in those three months, despite the tears, frustration, child neglect, poor diet, lack of socialising, we also laughed, bonded, learnt loads of technical jargon, listened, understood, saw the horrendous hours our truly wonderful nurses, social workers, HCA’s, cleaners etc work under. Most of all we also learnt an awful lot about FIL and his life and perhaps understanding exactly why he is the man he is!
We actually went away for a Family “do” to Devon in November. FIL phoned me one morning to tell me he had finally escaped! He was finding this extremely funny, we weren’t! We were in Devon! He was supposedly in Ipswich Hospital! As I was trying to sort out where he was Chris was on his mobile phoning the ward to find out where he was! After a few minutes of panic, the Hospital informed us he was in his room eating toast and marmalade and was on the phone to someone! You have to laugh at the absurdity of it all!
The highlights of his week were a trip to the Hospitals Costa Coffee when he was having better days (Still find it very depressing if we go in there now!) and his Friday night treat where he would choose what take away he wanted and the four of us would wander up there with all the food and have a family dinner! The kids learnt very quickly how to eat whilst sitting on Grandad’s bed!
Step mother in law (MIL) spent her entire time fighting for her Husband, if she wasn’t with him physically, she was fighting to get him home, on the phone with Social workers who were also fighting his corner. We learnt in those three months what true love and dedication really is.
After those first few months, we finally understood that it was not safe for FIL to go home. A Nursing Home had to be found for him. Somewhere as near to his and MIL’s home as possible but a place where his complicated needs could be taken care of.
Even pre Dementia FIL was what can only be described as a difficult man. Not sure there is anyone who knows him who would say he was easy to deal or live with! We have ALL had our issues with him. I am the first to say we didn’t speak for 3 years. We only started speaking again because for the sake of my Husband, I had to grow up and look at the bigger picture.
However, because of the way he was, the arrogance, the bullishness, the perfectionist, he was an extremely successful Businessman, running a very successful Shipping company first in London, then here in Suffolk. Hence the reason we moved to Suffolk. He has suffered with extreme pain from childhood with very bad osteo arthritis. He did not and still doesn’t suffer fools gladly! This attitude made a very successful businessman but a somewhat difficult Father, Husband and FIL!
He has been in a wonderful Nursing Home since December and has settled in as well as can be expected. The Staff are so lovely and caring. MIL still visits every day spending several hours up there, putting him in the wheelchair and taking him down the road to the local pub for his lunch at least once a week.
Chris and I visit every weekend, mostly together. The children visit every few weeks updating him on their life and achievements. I think FIL has told everyone in the Home several times that Oli is in the GB Baseball team and Rosie is not just a brown belt in Karate, she is also a maths Genius. He is also very quick to point out that she does not get her Maths ability from her Mother!!
His memory obviously isn’t good, some visits are better than others. We have learnt not to expect anything when we visit. It’s a bonus if we come out of there and say to each other,” that wasn’t too bad!”
Sometimes he can be in the middle of something that happened decades ago and is really worked up about it. It doesn’t matter what you say to calm him down or convince him that everything is as it should be the only person who seems to bring him out of the panic is MIL. Just a couple of weeks ago he was convinced that Chris’ Mother had visited him and if this was the case then he had commited Bigamy. Now maybe she did visit him but not as an earthly being! MIL managed to explain that his wires in his brain had got all muddled up again and he accepted this and moved on.
His mobility, which has never been great, is now non existant. He needs help walking everywhere. Dementia patients struggle to get through door ways. It can affect the wires in the brain and they can lose their balance or even just forget how to walk. He needs to be watched all the time. I give him massages every week for his back, neck and joint pain.
His behaviour changes between very quiet and docile, then very aggressive or very chatty.
It is the saddest thing watching this powerful man become just a shadow of what he was. There are times when the 35 minute journey back from the home can be spent in total silence, each of us wrapped up in our own emotions, exhaustion. It never leaves you.
Never one to dwell on negativity, there are several huge positivities to this truly awful situation.
The strength of our ability to cope with each situation that arises. From his worsening memory to giving him a strip wash, I will never ever forget when he asked me to shave him and Oliver just said, ‘Grandad, I will do it for you.’ Watching your 15 year old baby kneeling in front of his Grandad giving him a wet shave was a monumental moment.
Seeing the love between FIL and MIL despite the occasions when FIL has taken his frustration out on her.
The care and devotion of:
a, the NHS Staff. The staff are beyond Human, they are angels. They deal with everything. We love them.
b, the staff at the Nursing Home. The patience and understanding. The empathy towards the Family. We love them also!
The maturity shown by my Children, not just at the Nursing Home but in The Hospital. They just took everything in their stride. They were happy to just sit with Grandad or talk to the other patients, never showing any fear, and it can be a terrifying situation.
Even in the saddest situation the ability to laugh is always there. I have noticed it in the Hospice and it is always present in the Home. We can laugh and laugh at some of the things that FIL says, remembers, the things he comes out with about his childhood or his boys childhood. The things my Husband got up to!!
Finally the biggest positive has to be seeing the relationship between Chris and his Dad. Chris has absolutely stepped up to the mark. Has never wavered in his loyalty. Has helped him with EVERYTHING. Visits even after working a 60/70 hour week. Will drop everything if needed be to be with him. Has supported MIL at every turn. Has taken the rough with the smooth and the bond between him and his Dad is truly wonderful.
Someone said to me the other week that eventually FIL will forget who we are and we won’t need to visit as often. I thought it rather an absurd thing to say. Just because he might forget who we are, we won’t forget who he is so why on earth would we stop visiting him?