I am sad to say that my husband's dementia journey came to an end yesterday, peacefully with me by his side. He was an amazing man, loving husband, devoted Dad and doting Grandad. It has been an honour to share his life. RIP darling, your struggle is done.
Whenever I leave my husband I give him a kiss and tell him I love him. Today he said "I know you do". I pointed out he had dementia and might forget. "Some things you never forget" he said. Turned and smiled before toddling off with his carer.
And today we started the next stage in our dementia journey. This is a photo of my husband sitting in his room in his care home. He moved in today. This is not an emergency admission, it has been long planned. It is the home he chose while he was able. 1/n
Had a lovely evening with husband tonight. He didn't eat much so we mainly sat holding hands and listening to Adele on a portable CD Player I have bought. He said some lovely things. Where do I find the strength to get through the next few weeks?
Husband saves most of his smiles for the staff now. They have become his security, his day to day life. They share his life, I am a visitor. I think I also remind him of another life, one we used to share and never will again. I won't stop going. He is still my life.
It is one month today since this lovely man ended his physical presence on earth. He won't ever leave me, he will live on in my memories but we won't be making any new ones.
A year ago today this wonderful man physically left my life for ever. Thank you Trevor for sharing so many years of your life with me, for making me a better person and for leaving me such a long list of things to do! I miss you. X
Today's little struggle ... wrapping grandchildren's presents and keeping going to write ... 'and Grandad' and realising I'll never need to add that again. 😥
I would like to thank everyone for their condolences and support on the death of my husband. I tried to acknowledge everyone.
In his lifetime he contributed to a lot of research. He knew he wouldn't live to see a cure but hoped he could help future generations. 1/2
50 years ago this month I decided I was marrying him.
48 years ago this month we went on our first proper date.
44 years ago today we got married.
Today we went out to celebrate!
A friend kindly videoed the funeral cortage leaving our town. I am pillion on the hearse, the two bikes behind are mine with our two sons riding , followed by friends from various parts of our life.
I expected to feel sad at the loss of my husband, to cry a lot, to miss him. I did not expect to lose my self-confidence in just about everything: my driving, ability to organise a holiday, ability to ride a motorbike, ability to leave home, ability to meet people ...
Watch out for those Park Run times coming down once I can get out training early morning and sleeping at night! We have lots still to do and we will be doing it as long as dementia allows. n/n
Grandad was dressed in some very warm winter clothing and put in his wheelchair to share an hour with his 'girls'. He never lifted his head but he listened to them play, had hugs and made facial gestures they just 'knew' were smiles.
Husband woke this morning & asked me why I wasn't at work. Explained I had given up work to care for him. He asked when & I gave him a brief timeline. He cried. He couldn't believe I had given up my career for him. It is the first time he has ever mentioned it.
We agreed the criteria and think we judged the date right as we are about there. Many will not understand this decision but we spent much of our capital having adventures and creating memories not on altering our home for the next stage. Joint decision. 2/n
Have been a bit weepy the past week. Much more than earlier. Is that as shock wears off? Is it now the busyness of the funeral is over? Or is it perhaps because this is the longest I have been away from him in 48 years. I think it is that. This is for the rest of my life now. 😥
Yes he is a little confused, overwhelmed and weepy tonight but he is that every night because he doesn't recognise me when he wakes. And he wakes a lot.
We will still be be creating memories and having good times. We will still be together for much of the day. 3/n
In the roller coaster world that is dementia, husband was in a bad way tonight. I sat with him till his evening medication was allowed and took effect. I played George Ezra as he had requested yesterday. I stroked his leg. Shall I flip a coin for tomorrow's experience?
We got out for coffee today and a sit in the sunshine. Not far from the hospital but a car journey with all its transfers. He is giving you all a smile here.
And here he is in the lounge this morning. You would never guess what a shocking night he has had. Making the choice and having it go smoothly are not necessarily the same thing. Settling time for both of us. I miss him like mad.
40 years ago today i married my wonderful husband. Today we rode over 100 miles on the same motorbike to stay in the same hotel that we began our married life in. He doesn't remember it but knows it is important to me.
Today's positive tweet ...
Nothing will beat this for the rest of the day ....
My daughter-in-law got a recording of my husband saying "I love you" about two years ago. For Mothering Sunday they ordered, it arrived today, a bear with the recording in his paw.
Waiting for his tea tonight! Settling in is still a bumpy road but the home are amazing at sharing their issues, working together to try and find solutions. One thing which is NOT an issue is the food which he is loving and I don't blame him!
Husband has been in this Mental Health Unit for 260 days and leaves tomorrow for a palliative care place. Why have I only just discovered the free WiFi?
If you thought husband's
@parkrun
life was over .... think again. Look what the
@rutwaterparkrun
presented me with today from our local parkrun family in recognition of his contribution as a runner, a walker, a wheelchair occupant and volunteer. I think it was a bit dusty. 😭
I took your advice and did a bit of self care this morning. I went to
@rutwaterparkrun
. Sunny but breezy. I set myself the target of walking the 5km in 50mins. My final time was 47min 57secs. Job done.
It is a year ago today the dreadful establishment calling itself a care home had my poor husband sectioned for having disturbed nights and hallucinations both probably caused by the broken back they failed to seek any medical help for. I will never forgive them.
Another smile for you. He was amazed at all the smiles, waves & good wishes.
Sat in ward garden & listened to a podcast on Bengal tigers in Nepal. He loved it. Have downloaded loads on his phone so should be able to listen to them regularly. Very tiring for him but interesting.
Struggling today. Gut wrenchingly tired. Fed up with being in pain. Incredibly lonely. But must get myself moving to cook husband's food for the day, drive to the mental health unit, feed him, maintain cheerful one sided conversation for two hours and drive home.
Happy Christmas to all my Twitter friends. To the recently widowed facing their first Christmas alone, we can do this, we can plod through, it won't be the same, nothing ever will but we can get through. Try to find one thing to smile about and share them later.
Husband was looking at some old photos today. Struggled to recognise anyone. Looked at one photo and said "I always liked her. Lovely woman. Shame we didn't stay in touch." The photo was of me about fifteen years ago. Nice that he liked me.
@maryamnerjis
Young onset dementias are often different. He was still there till the last few days. In some ways that made it worse. In some ways it made it better.
On his death he donated his brain to research. In his memory we have made the Dementia Research Centre his chosen charity to try and raise money towards that research. If you knew Trevor and wish to contribute please go to:
Everyone says I am doing really well. I appear to be functioning. Only I know the truth. Forgetting. Mistaking. Sitting staring. Can't do this without him.
I have had to sit very quiet about my news for what feels like too long. I can now tell you .... our eldest son has been promoted to Professor - Professor of Leather Science. We are very proud.
I am one of the Government's economically inactive - young enough to work but not actively seeking work. I wonder how many other unpaid carers are? The social care crisis is hitting more than just social care, it is hitting the entire economy. Sorting it is where the growth lies.
I found out this week that my big sister is not on X so I can share this with you after all. As a break from knitting I embroidered her a bag for Christmas.
@detly
Husband was starting his
@OpenUniversity
degree when our son was born. Severe colic. Had to have attention all day. Husband walked around with him in papoose reading his Science units to him. Son was gifted at science at school, now has PhD in Chemistry. Never too young!
When will the guilt stop? When will I stop lying awake at night thinking I could have done more? When will I stop questioning every decision? When will I stop worrying I let him down?
Still not allowed to see husband so wrote him a letter tonight to be read to him. I wrote the chat I would have told him over his meal. I wrote as I would say it not as I would normally write. I will probably never know whether it even gets read to him but I feel better for it.
Husband is responding so well to the new medication that he was allowed to have his birthday tea with his girls. Despite looking asleep most of the time he came out with perfectly timed killer comments every so often.
@DoctorMayJay
When first married, canvassers come to our house & asked if my Mum or Dad were in. I said no & he gave me a leaflet to pass on. I said they lived over 100 miles away so weren't eligible to vote. He asked who home owner was. I said me. He laughed and walked away. So did my vote!
Back at the hospital after an afternoon at the barbers. His usual barbers. 40 mile round trip. He is exhausted but very happy. He likes looking neat. It means a lot to him. I think the exhausted smile says it all.
No photo again. I arrived to find him in his room with the door shut. Swallow hard and open the door .... found him sitting in his armchair with a carer in the other chair listening to Meatloaf rather loudly on the Echo, hence the closed door. Happy as Larry!
My cover has been blown by
@DuellMum
.... I was today declared one of the three councillors for our town on the County Council (really a unitary). I am exhausted from campaigning but delighted to be continuing this man's legacy locally.
Husband had a dentist appointment today. That was fun. But I must give a shout out to the Mental Health Unit he is held in, even though I can't tag them. Dentist declared them among the cleanest teeth he has ever seen come out of hospital/care. Husband cannot clean them himself.
14 months ago today this wonderful man physically left my life forever. These photos are from Christmas 2021. (I have no idea what profound comment he is making about the food. Probably a classic Trevor one liner.)
Feeling a little bit lonely today. I have just cancelled all my New Year's celebrations as I cannot risk a knock. I have been put on strong blood thinners to deal with a DVT in my leg. It will make the empty chair in the lounge a bit poignant as I start another year without him.
My elderly neighbour of 29 years is moving to a care home on Monday. She insisted on taking me out for a meal today. We went
@TheFalconHotel
and had a very tasty, relaxed lunch. We both live alone now so the company was as welcome as the food. The weekend has started.
Today is 150 days since my husband was sectioned & put in a Mental Health Unit. Tomorrow it is 5 months. He has declared ready for discharge 3 months ago. He has been waiting for a care home place. Fully funded. Noone will take him. Darling of the staff on the unit.
My husband is likely to be transferred from his Mental Health Unit to a private hospital soon. Funding is in place, contracts signed, nurse & doctor transfer is happening today. No-one has talked to me. I only know about it because the MHU has told me. No sight of the care plan.
I feel a bit sad that my Mum's plot is over 100 miles away and will not receive any flowers today. I am being a Mum myself today and being taken out to lunch. I hope she understands I don't love her any the less.
#AlzChat
one of the biggest battles I faced when my husband went into care was making them understand he was still present. He became almost non-verbal but he was still able to listen and understand and enjoy.
Coffee out this morning with this gorgeous man at a pub very close to his MHU. He was very tired after a bad night but enjoyed the coffee.
#StoughtonGrange
#NiceCoffee
I am not sure there were any smiles tonight but we had a little chat for about 5 mins. He enjoyed some smoked almonds and chocolate ginger puddles even if he didn't eat much dinner. Then I rubbed some hand cream into his hands before he fell asleep.
Tonight husband was sleepy. He had a few mouthfuls of food and then we listened to Eric Clapton during which he ate more weight in chocolate than he had in his meal!
It is now 100 days that I have been taking my husband's food into him in the Mental Health Unit. Decided to celebrate and give him a three course meal tonight.
Today I achieved my 100th Park Run and my 100th Volunteer on the same day
@rutwaterparkrun
. It was sad that Trevor wasn't there to share it but the support I got from other volunteers and runners was amazing.
Had permission to take him out for a walk today in the wheelchair around the grounds. He moaned the whole time because of the cold and kept pulling faces at the camera, so this is the best of the bunch!
I have just been back to the ward to collect the empties and persuaded them to bring him to the door. I told him why I couldn't come in. Told him I had been sat in the car park. Told him I loved him. Huge smile. Huge, huge smile. Let's see if we can do the same tomorrow.
I have brighter news for you today but no photo. Brought husband back to our town this morning to have a coffee with our elderly neighbours in the
@TheFalconHotel
It was lovely. He joined in with smiles & smirks & laughs in the right bits of the conversation.
Thirteen months yesterday this lovely man physically left my life. My goodness I have missed his support during this operation and recovery. There have been times ...
She asked for my name and address so she could send me a card. I said there was no need just help someone else in the future. We have all needed the kindness of strangers at some time.
Today a bunch of flowers arrived with a note. Serious detective work gone on there. How lovely!
Yesterday's positive tweet ....
(Sorry in all the rush I forgot.)
Proud parent moment ... our son being presented at University of Northampton as a new professor.
It is one year since Trevor and I did our last parkrun together. We didn't know it would be our last. Today I marshalled the Juniors. He used to love that role. I took along his famous hooter and gave it its first airing for a year. He made sure the sun was shining.
Lunchtime. Fish pie today which was demolished pretty quickly. Still got his appetite! Those eyes weren't seeing a lot today but I got a hug when I went which is the first for a while.
Warmed up enough for a little walk round the garden today.
He had a difficult night out of the blue. Don't know where his brain went but it was not a pleasant place. Slowly came round but clearly upset him. Let's hope there are not too many more nights like that during settling.