Haven’t posted for some time as you might know my husband as very unwell for most of this year.
But I felt I had to post this morning our Son and his wife are doing the Jurassic Coast Challenge Paul in aid of BHF because of me and his Dad and his wife in aid of MacMillan care in memory of her parents. He thinks it will take 11-12 hours to complete. Just so very proud of both of them.
John is now in a Nursing Home, and seems very settled. It’s close enough that I can visit 3/4 times a week sometimes he knows who I am sometimes he thinks I am his sister. The nursing staff seem lovely , I just need him to be safe and well cared for, sometimes things are so very difficult. The man he was is still in there somewhere. If I am talking about the granddaughters there is usually a light bulb moment and he comes back to me.
Have my 5 year review in a couple of weeks with the cardiologist and an echocardiogram first one since 2019 let’s see how my tissue valve is fairing . 6 years ago he told me to avoid stress! and put myself first. This year as been nothing but!!
Pauline
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I literally cried when I read your post you are one of the most loveliest people I have met on this Community and what has happened regarding yourself and John just has me in tears
You are still a very special couple and always will be
This must be very hard for you but if anyone has the strength to do it you have
Keep talking about those lovely Granddaughters to him and I am so glad he is somewhere nice where you can be with him often
Now what a Handsome Son you have but that does not surprise me I expected that
And yes I would be so proud of him to and you and John brought him in this world and helped make him the man he is today so John is always there a part of your children
Good luck to your Son and his wife today not that they will need it if they have half the determination and strength you have they have done it before they start
Let us know how your check up goes and thank you for all the support you have given so many on here and remember we are here now to try and support you to x
You really do match up with your user name. Thank you for your really kind words. I think the last 5 months have been the most difficult in my life, but now John is in this Nursing Home I am trying to relax a little bit. As I said the staff are lovely and trained with dementia, they treat the patients with such dignity. I will sit in Johns room he maybe sleeping and the door is open I can hear the staff talking to other patients and it’s with so much care and understanding. Johns Gran died over 50 years ago he was very close to her, but he thinks she comes to visit him every day. Will ask me regularly where she is. I just say she as popped to the shops or something like that. If you try to tell him she died along time ago then he gets very emotional.
I am so sorry you are having some problems. Hopefully they can get you sorted quickly. Must admit to being very nervous of my review. You never know what they are going to say! Paul and Melissa have put in lots of training for this, though Paul only came back from Dubai Thursday night after a week there on business. The Jurassic Coast is in your neck of the woods isn’t it? Looking at the pictures very uneven surface.
And suitably fitting for me to live there because my wife thinks I’m something of an old dinosaur hahahah I keep telling her that I’m an old hippy. She said "same thing" 😳
I mean there’s no need is there?
🤣🤣🤣🤣
My name is Bond, James Bond and I take my aspirin shaken not stirred 🍸
So nice to see you on here again. You are missed and I’m sure, like me, many often think of how you and John are doing.
I’m glad he’s in a safe place and you can relax a little that he’s now in good care. I can’t imagine what it was like for you. You are a very strong person and that comes through in every post.
Your support to me was outstanding with your kind and informative advice. I will always remember that.
The very best of luck to your wonderful family on their fundraising challenge.
Please let us know how you got on in your 5 year review. No stress!! That’s a good one! Life takes us all on different challenges and you have had more than most.
Good luck to both of them (and to all the other runners), I live not far away from their route and can vouch that they've certainly got a lovely day for it!
Hi Pauline. That's a wonderful challenge for your son & DIL to be taking on. Very good luck to them both. x
I can't imagine how tough it must be for you with John now in a Home, but it's good that he still comes back when you talk about the family.
I was diagnosed with a (non-cancerous) brain tumour a couple of months ago. I'm on watch & wait at the moment, with a repeat MRI in 4 months to see if it's growing. The MRI is fun as they need to get someone along from the Pacing Clinic to turn my ICD off and on again. At least my heart seems to be stable at the moment.
Oh I am so sorry to hear your having yet more difficulties. I pray your next MRI gives you some good news. Johns problems are from multiple strokes, he had a major one in 2016 but beginning of January he had at least 3 more. He now has the same symptoms as dementia. Afraid his brain is a bit scrambled! Take really good care.
Love and best wishes to you and all of your family. It is so hard to have to put someone in a home. I know, speaking from experience. I am glad you seem to have found a good one for John.
The decision to do this was a hard one, but he needs 24 hour care, we have been married 52 years and it’s in sickness and health! So it did feel as if I was letting him down somehow. Now he is settled there I can see it was the right thing to do.
Hi PaulineI'm glad to hear John is settled and that you can visit. We'll done to your son and daughter in law, wish I had that amount of energy! Good luck with your check up x
Hello Pauline. Well done to Paul and Melissa for taking on the challenge. It is lovely to hear from you again, I often wonder how you and John are getting on. It is good that John is in a good care home and that you are able to visit him although visiting can be very tiring too, so take good care of yourself.I haven’t posted for a while either, Bob had another stroke in March and is currently at the rehab unit in Aberdeen but will hopefully be sufficiently mobile to be home in about 6 weeks time. His left arm and leg were affected this time.
So very sorry to read about Bob, Johns first stroke took his left side as well. But we managed for 5 years until the beginning of January. I found him on the floor unconscious not breathing. Long story short after a couple of MRI scans he had had multiple strokes and now as the same symptoms as dementia. His brain is scrambled I am afraid. Hence the Nursing Home and 24 hour care.
I will say a prayer for you both and you can get him home soon. When John came home after his first stroke there was lots of tears but lots of laughter to. Some of the situations were so absurd you would laugh out loud!
Will certainly post after my review, I have a great excuse for the stress!
Spoken to Paul this morning, thought he might have had to roll out of bed but he said he didn’t feel to bad had just done some stretching and was still in one piece. He is talking about doing it again next year so maybe you will be on the same coastal path!
How Pauline....an inspirational post. Please wish your son and wife good luck and best wishes for what they are doing...fantastic, and also my thoughts to you. Not easy times for you at all. As you have said, your husband is in a safe and caring environment where you can visit often so you need to spend some time also on making sure you are as alright as can be too. Thank you for your lovely post 😚
Thank you for your good wishes, they both completed the walk ahead of schedule have spoken to Paul this morning thought he might have had to roll out of bed but he says doesn’t feel too bad at all, talking about doing it again next year! Glutton for punishment 😂 The decision about the Nursing Home was one of the hardest things I have done though had lots of input from our son’s. He seems very settled not agitated as he was in hospital. Friday he was telling me how much he likes the colour of the door to his bathroom! Not just once but over and over! It’s been such a steep learning curve, with dementia it comes on gradually because John had multiple strokes his brain is scrambled one minute ok next gone! No time to get used to the idea, he looks like my husband sounds like him but what he is saying doesn’t make any sense! There are times when he is there especially telling him about his Granddaughters, we have 5 and it’s as if there is a light bulb lights up and he remembers. Paul’s daughters one is doing A levels and the other is doing GCSES this year. Maddie started last week Tilly as her first Tuesday telling him how Maddie’s first exam went and he came right back that light bulb moment was wonderful he is still somewhere inside I just keep holding on to that.
Lol. I am sure your son is too elated to feel the aches!!. Fantastic they've completed it. Having had my father in law in care for some time, I know how heart wrenching it is. One of the things I was told and always remembered was never correct them or argue....my mother in law was good at that!! It's as though whatever they are talking about is where they are in their minds at that particular point , so just go with it. We were all distraught initially at him going into Care but it was getting more and more difficult. It was the rest of us that were sad but Dad seemed perfectly happy. Even through Covid when we couldn't go in to him and were all so upset by it, he carried on in the same way and always had his smiles for us through the window. He had odd times where he was a little agitated but calmed down quickly....and as you say....still had the times when he would come back to you......all cherished times. He's still there.....but sometimes in a different time zone! Am sending you positive thoughts and best wishes. Take care x
Hello Pauline. Hearty congratulations to Paul and Melissa and such good causes to run for.I'm so glad John seems settled in the lovely care home you found. It's great there are 'lightbulb' moments when the chats move onto the grandchildren.
My own dad always remembered the names of my two sons and his great grandchildren but rarely remembered my name!
The last year or so have been so stressful for you but you've got through it all with help from your amazing family.
You're truly and inspiration to all of us.
Take care and know we are always thinking of you and John.
Isn’t it funny how the brain works, like your Dad John comes back when I am telling him news of the Granddaughters but some days he thinks I am his sister! In the past 3 weeks have learnt such a lot, he is on the dementia floor and the staff are all dementia trained. The nurse in charge (Nancy) her father had the same route as John. Multiple strokes and the damage to the brain. She asked if we could as a family write Johns life story, if they get to know him when he is talking they can hopefully bring his memories to the forefront of his brain! It took about 3 days but we finished and it was only then that the boys said wow what a wonderful life their Dad has had. Over the 5 years after his first stroke we had many conversations about our lives together, he always said he had had a great life and he has a wonderful family. These conversations play out in my head and give me great comfort. The staff seem so caring I will sometimes sit in Johns room and he will have nodded off and his door is open I can hear the staff talking to other patients it’s with so much gentleness and kindness. One of the things Nancy as said is that they are there as much for the family as the patient. I keep getting a hug and being asked how I am.
So as I used to say after my surgery it’s onwards and upwards!
Hello Pauline. Well your post brought tears to my eyes. You're such an inspiration.
I remember completing almost a book when I was asked to jot things down on a form called "This Is Me". Like you it took days as things kept popping into my head.
I've just looked at the book I wrote (when dad passed at the age of 99, the care home gave it back to me). 27 pages with old photos of me, mum and my sister almost 70 years ago!!
I'm so glad both you and John are being well looked after by the care home nurses. It's such a hard job they do but I do feel it's a vocation.
John's in good hands and your children, through your hard literary work, can admire and be astounded by their dad.
Good luck with your 5 year review. You've certainly given your mended heart a lot of work over the past 5 years!!
Will let you know how I get on. It’s on the 1st June so a couple of weeks yet. Must admit to being a bit nervous as you say my mended heart as certainly been worked especially since January. Just hope my tissue valve is still ok. It seems so long since the pressure was checked. You writing your Dad’s life story I seem to be travelling the same road as you. Thinking about it maybe it’s something we should all do, there were stories from before the boys were born and from when they were very small that they had no idea about. John spent most of his working life as an officer in the Merchant Navy so as seen much of the world. Some quite hair raising moments that their response was WOW I didn’t know that! I suppose we all have a story to tell!
We certainly do have stories to tell. Dad was a top electrical and mechanical engineer for what is now BT.
That might explain how he disabled the locked door mechanisms in his first care home and managed to escape!!
John certainly has had a great and exciting life when he was in the Merchant Navy. A lot of those memories will be brought to the foreground when the care home staff (or you) talk about them.
It's very important for dementia sufferers to remember how important they were and still are.
Love, hugs and comforting cuddles heading your way. Jan xxxx
The story about your Dad escaping really made me laugh out loud. I had an appointment with our solicitor a few weeks ago and she was telling me a story about a clients Mother who had dementia in her 80s kept escaping from the care home via a kitchen window they never found out how she climbed onto the counter top! The solicitor said she was a nimble old lady!!Every door to the outside as a keypad, and Johns on the 1st floor so the lift as one too. To leave I have to get someone to let me out! I still have to do a lateral flow test and fill out a form before every visit but they have stopped taking our temperature as we walk through the door.
Hello Pauline. I've got another note book detailing the many escapades dad enjoyed while in care. The daftest I think was dad stripping the wallpaper off the communal dining area as 'he didn't like it and Peggy (that was my Mum who passed away 35 years ago) was going to repaper the walls'.
The care staff were lovely about this little mishap and the walls were papered in a book case full of books wallpaper. That just caused all the residents with dementia to try and take books from the wallpaper!
The story of the very nimble 80 year old lady made me smile. Kitchens are quite dangerous places for dementia sufferers to be in. When dad managed to get into his care home kitchen he just unplugged the fridges and freezers 'to save electricity'.
I think most care homes are insisting visitors take lateral flow tests just to be on the safe side but I think that safety measure will disappear soon.
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