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New to dementia journey - Page 4 - Carers UK Forum

New to dementia journey

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941 posts
Pet66 wrote:At least I'm warm and dry and have plenty of teabags! Xx
Hi Pet
I hope you don't mind but I quoted you on another thread. I know you've been through a lot lately and have some adjusting to do but your warmth, humour and caring shine through and i am sure you will get through it better than you perhaps think right now. Just keep that supply of teabags topped up!
sending a hug
Hi Pet
Bad time, bank holiday weekend? Thinking of you tonight.
Hi Pet,

It's good to hear that your husband is settling into his new home. You're so right in what you say - he still has a life, it's just different.

It's a huge period of adjustment for both of you and the bank holiday weekend perhaps makes it harder, as you have time on your hands and are probably remembering previous Easter weekends which you spent very differently, together. I've been feeling a bit lost too, as this is my first Easter since Mum died, and I would normally visit her over the weekend.

Anyway, happily your husband is still around, just a short journey away, you still have each other, so hopefully there are lots of happy visits ahead for you both.
Thinking of you too. We have to battle through the times of despair don't we. Bhs do seem exceptionaly difficult. Still get the knot in my stomach wondering what the days visit will bring.
Am meeting my friend tomorrow for late breakfast. She recently lost her mother to dementia. We have a catch up on hubby but then have other chats and a mooch around the shops. Ordinary womens things. Hanbags.lippys etc! I still feel guilty though. Would really like to get home afterwards and take the day from visiting. Whether that happens remains to be seen. My daughter's will be seeing him.
Hope your day goes well. No doubt you will have your moments. It's the price of loving or having loved someone so much xx
Sad today. Not that I'm ever really happy but try to count blessings. Today's visit was OK. Hubby pleased to see me. Has been tetchy at times with staff. He was talking about how we will get somewhere. Not home I don't think. So had to keep saying he wasn't fit enough yet to go out. When I decided to leave he said have I got to stay here. It broke my heart again. I nearly didn't leave but would poss have endured that later. I hate to say this but I almost ( and emphasis almost) understand why some people cannot cope with visiting their family member who has dementia. I do not wish to be judgmental. Each person has to do what they do for whatever reason. Grumpy sorry for myself mood!
Pet, I don't know whether this is a practical possibility (or even an emotional one maybe?), but is there any chance your husband could come home for 'sleepovers'?

So often, I think, reading these boards, and from my own experience of 'inheriting' my 89 y/o MIL with dementia a couple of years ago, the 'problem' of caring is caused by the 24x7 nature of it. So often we can care 'for a bit' but not 'indefinitely'.

If that is so in your husband's case, then is there any chance that you could 'share' the care with the residential home? If you and he could cope with him coming home for, say, weekends, or whenever, that would surely make it all less traumatic than it is?

I'm so sorry if this isn't possible for any number of reasons, but wanted to make a suggestion of it. We tend to see residential homes as 'permanent' but I don't see why. My MIL used to come and have twice weekly sleepovers, midweek and Sunday, and that gave her a sense of being 'back at home' and we'd have a nice evening together watching TV etc, but then the next day I drove her back for lunch and 'handed her over' and got on with my own life. (She probably still could even now in her home for more 'advanced' dementia, but I fear she would be extremely disoriented, and very restless at night - plus we have steep stairs! - and if she is then too restless back in the Home they may not be able to keep her secure there....so sad!)

Of course it's significantly, essentially different because its your husband (and so, so young for all this!), and therefore maybe I'm suggesting the impossible.

I do agree with the posts indicating that you are going through a form of bereavement right now. When I was widowed some years ago, the HARDEST thing was 'coming home to an empty house'. Just broke my heart, every time I came back and saw my husband 'not there'.

Wishing you all the best possible at such a sad, sad time.

Kindest wishes, Jenny

PS - I don't mean this to sound 'trite' etc, but do always cling to the possibility - even if only theoretical - that one fine day treatment will improve, and he may 'heal' to a greater extent than now. Medical science advances all the time - and sometimes just hanging on to that hope can really, really help. I found that after my husband died, I realised that humans can live without a lot of things - but not without hope.
Hi Jenny . I posted a reply and it didn't go through? 2nd time it's happened. My hubby only went into the nursing home last week. His needs are very complex and unfortunately it won't be possible for sleepovers. The consultant adviced for his sake and mine that he go to nursing home. Not sure about him even coming to me for cuppa and cake? Early days yet. Am so sorry you lost your husband. Very painful time. I do agree though that hope is something to cling too
Take care xx
Maybe you misunderstood my Ist post? My hubby is 71 this year and we have been married for 48years. Apologies if you hadn't misread. He is young for this in my opinion. He was young at heart and had a thirst to learn all of the time. It's a cruel illness but then so are lots of illnesses.

Following your journey which reminds me of when my mum also with dementia had to go into a home. As others have said, you are in many senses going through a bereavement and mourning your old life and what your husband once was. Be gentle with yourself and take one day at a time.

Advice from me, do not take your husband home even for coffee. He invariably will want to stay and it will make the return all the more painful. He (and you) will need to accept the new normal. I too wept buckets in the early days, then painted a smile on my face to visit.

I found it useful in the early days to find things that mum could help with, sorting photos into new albums, signing birthday cards, teaching me to knit, anything that gave us conversation other than when am I coming home .... Could your husband "help" the Activities Coordinator to plan events?? I also found it helpful to visit one hour before mealtimes as it meant I had a good excuse to leave ...

Good luck. I too found bank holidays hard
Hello Ann. Thank-you. I honestly don't feel I could have hubby home even for cuppa. When he needs the toilet it's very difficult. Also, and this is a very personal opinion, I feel it may be cruel. I would love more than anything to see him in his chair, remote being overtaken by him etc. It's not going to happen though very sadly. Want our old life back with the UPS and downs. We can't always have what we want. I'm grateful for your advice. Really helps although guilt and pain are never far away. I'm trying to make life easier for him. Ordered a dementia clock. Bought him t v for his room and will plod away with things. The activity Co ordinator back on Thurs so we will see. I visit everyday with the exception of today. Had time out with my friend. He gets visitors everyday. We all feel dreadful when we leave. We know he is safe though.
941 posts