Looking after my life partner when he had dementia
My life partner of 30 years died from vascular dementia. He was 65 when he was diagnosed however he had symptoms long before that time. It started like what we all say ‘senior moments.' Sadly, it went bad really quickly as he lost his ability to put a sentence together as he thought he was making perfect sense so it was frustrating for both. The evenings, after the sun went down, was really bad as that is when he would wake up and start to walk around the house and once I found him outside in the cold depths of a January night and he didn't know how to get back into the house, he was all confused. He lost his ability to recognize himself in a mirror so he would talk to himself like a stranger
FOR JOHN BELLAMYS COMMENTS
Of course personal habits were not any thing that he could do for him self.
My social life became no more. Friends didn't come by as they couldn't deal with it and as I could not leave him alone, I was watching all the time.
I never slept a whole night . I had to do everything to look after the house and car,and washing clothes and cooking and of course any thing that went on in the night otherwise he would pee wherever he saw fit.
He eventually was put into a care home and he would kick and bite if anyone came near him so I went every day and sat there from 12 - 6. To make sure he ate something as his breakfast was always there and never touched not even lids taken off . He simply didn't know how and the staff were not that helpful and left him there to starve if I didn't feed him.
Cambridge is not that good at Social Services and there are often negative reports in the local paper concerning this.
This is a hideous disease and the suffering that he and I suffered through is unimaginable.
He died late March 2020 and the cause of death was put as Covid - as several in the home were diagnosed and the
place shut to visitors although I really am not sure this is accurate. Regardless, he was out of pain and the cOnfusion he had been in for some years. I miss him every moment and because of so much lockdowns and quarantines, I cannot go out and meet new people, or do much at all, and this is not an easy way of getting through the grief of it all. I am home alone and cannot wait to get out into the real world and start meeting people again. I'm only late 50's and there is hope for me yet. I don't want another partner, not in the near future, I just want others to know the hardship of this disease and how hard it is on loved ones. It is also time for me to start a new life - which frightens a bit and Hamilton Hall looks ideal if and when you re open.
Thnaks for your time. Robert P.
John Bellamy comments :
Thank you for your emotional and thought full e mail Robert.
I hear you. Absolutely. Having undergone something similar myself many years ago with a friend who died in my arms.
POINT: EVERYONE in this position needs to realise one thing :- There are no awards for martyrdome.
YOU MUST GET HELP - Contact your local Social Services and DO NOT try and do it all yourself as if anything happens to you - the carer - who is going to look after him ? YOU MUST have help with a Home Nurse who will come in night and morning to help relieve you at home, and however brief these vists may be, IT HELPS ENORMOUSLY, not just that they will wash and dress him for you, but will give you a brief break and THAT is important for your own well being.
My own Mother looked after my Step Father in his wheel chair in a flat with no elevator and struggled - badly - and she phoned me in Mexico where I was living to complain about all the work she was doing but it was all about ' poor me' and very little actually about my Step Father, as she saw it all as an excuse to get attention -
' Look what I'm doing all alone and with absoluetly no help from anyone.'
I asked her if my brother David was helping and she said she had not called him and told him.
NOW: My Step Father had been - at that time - 6 weeks in this state and my Mother had been badly coping for the 6 weeks yet had not thought to call my brother who lives 3 miles away from her for help;- instread she waited 6 weeks to call me in Mexico, where there was nothing I could do but worry myselkf sick, and I LOUDLY TOLD HER OFF.
She had a son not 3 miles away and she had not even informed him of any of this - he was unaware - and would help - but she wanted the ' poor me ' and attention for what she was doing and after I phoned my brother from Mexico to Bournemouth and told him his Step Fater of 3 miles away was ill - HE WENT BOLISTIC AND MOTHERS SELF CENTRED - ME ME POOR ME - ATTITUDE' - he was furious with her.
She refused to see any of it and my brother thEn spent the next couple of weeks running around getting Social Services involved and all sorts of items put in place to help, and my Mother resented this as she wanted to be able to claim she did it all on her own - and end up NOT helping her husband at all in dropping his wheel chair down the stairs one afternoon WITH HIM IN IT and it beggars belief that a women in her 70's would try and lower a heavy man in a wheel chair down a curved staircase - and he went tumbling down with the wheel chair on top of him... AND SHE STILL DID NOT CALL ANYONE FOR HELP.
PEOPLE : At any time - Do not be a martyr - There are no awards for you being a martyr and you will harm the person you are caring for with lack of knowledge and lack of facilities and you need help. If you do not, then do not complain, do not moan, get on with it and accept you have a choice. If you ignore what is out there to help, then you must accept what you get. If you ignore family and friends who are willing to help and you do so because you want control and for everyone to say - ' Ah poor Johnny ' - or whatever, and to put it bluntly - WE WON'T - we will tell you off and guide you get the help you need and if like my Mother you fight against helpers, then own it and we will leave you alone and you will be responsible for a lack of care - a lack of thought - and if and when your partner dies, wouldn't it be better to realise you did your best - and not you did the minimun because it was - really - all about you and you used your ill partner as an excuse for attention.
Is that you ?
It certainly was my Mother. Do you really need help but are afraid to ask ?
No one looks down on you for not coping.
No one things less of you for putting a partner into a care home.
No one wants you to struggle. Get the help you need and do not be put off by councils and NHS bullshit and excuses.
You have paid for this through your taxes.
Then you can spend some better quality time with your partner and you can de-stress and enjoy what time you have left together.
It's never easy. My thoughts are with you in this, as it is hard and emotional. John Bellamy ----------------------------------------