New to dementia journey

Hello. My husband of 48years has had strokes which have speeded up vascular dementia. His complex needs mean he has to go into a nursing home. He has been in hospitals since November. Although we have a wonderful and supportive family, the situation consumes me and coping with the loneliness at times is difficult. I understand that others are worse off etc and I try to acknowledge this. I also know that hubby is grieving in his own way. It’s good to share these feelings

Hello Pet and welcome,
So sorry for you and hubby, it’s a bad time for you. You are grieving too because although your husband is still there, the life you had together has gone and so has the man you knew, to be replaced by a shadow of his former self.
Be kind to yourself. Don’t try to do too much but rest when you can, try not to become isolated. Don’t be afraid to rely on that wonderful family and let them help you as much as possible, because they need to be able to help.
Sending you a big hug and wishing you well.

Hi Elaine
Thank-you for your kind reply. Am fortunate that I can rely on my family for support. They too are grieving for Dad and Grandad. Our 6 yr old grandson doesn’t actually see any one different at the moment, just that Grandad has a poorly arm and gets very tired. It’s very refreshing and uplifting. Hubby is in middle stage dementia so hasn’t forgotten us and at the moment is affectionate. As I am sure you know, the head and the heart have different emotions. My head knows he is being cared for but my heart is breaking.

May I make a suggestion. Probably done already but phones are so clever these days, although I can’t even answer mine correctly half the time, but could one of your family take a video or sound recording of you both on a visit soon? Just for a memory for you to treasure one day.
Sorry if I’m way behind you here.

Thank-you. I will consider that when hubby is settled. This seems to be about me. May I ask how you are? X

Hi Pet, welcome to the forum. If there is any discussion about which nursing home he is going to be transferred to, make sure it is as near to your own home as possible, so that visiting is easier. My mum in law was admitted, as an emergency, to a home 14 miles away, so visiting was always difficult. My own mum was in a home just down the road from me, so I could pop in on my way to the shops, and sometimes called in again on the way home if mum had wanted something.

Hi Bowlingbun
Have checked out a lovely nursing home and it’s a short bus journey away. My son in laws will take me when they can. Am waiting for the go ahead re funding. I visit hubby most days. Am hoping that I will have a day or two free sometimes to allow my inner strength to keep up. I do meet a friend once a month for breakfast and I enjoy that. It’s early days yet and is acute onset of dementia. Am trying to learn not to feel guilty.Easier said than done! Am sure you know these feelings?
The forum is already of some comfort to me. X

The visits to hubby of late have been good.Today was difficult. He was rather aggressive. To the nurse and then told me I was making an inverlid of him. I wanted to get a nurse to help him get to the toilet. Afraid I told him he is one. How cruel of me. He was OK afterwards but I left feeling very upset. He certainly was more confused today.Expect I have to learn to cope with it but today I feel I can’t. X

Be easy on yourself Pet. It’s impossible to be all ‘sweetness and light’ all the time, in fact I fail miserably most of the time. I often have to walk out, take a deep breath, pace a bit and then try to return with a smile. Tonight I paced the length of the garden after a rambling and confused discussion about baked beans (none in cupboard) versus spaghetti on toast for Mum’s tea. Sounds hilarious but I was spitting feathers because it was so hard to get a straight answer to ‘Sorry Mum, we’re out of baked beans, would you like spaghetti instead?’ Aaaagh!

It doesn’t sound hilarious to me. It sounds very frustrating when all you want to do is give your mom her tea. As dementia patients apparently like sweet things maybe offer jam on toast if it happens again lol. We just want pre dementia person back and that’s not going to happen is it.
Have you been referred to an admiral nurse? I’ve been 3 times and found it helped. Doesn’t take the pain away but eases it for a while. Xx

Pet, my mum’s nursing home had regular events in the home, and trips out for those who were physically well enough (sadly not mum). Relatives were always welcome to join in, and could have lunch with their relative, at minimal cost. This might be easier than just visiting with nothing much to do or talk about. I always took mum flowers, she loved watching me trim and arrange them, just as I used to before I left home, but in all honesty it gave us time together but with a point to the visit. Once your husband has moved, make sure you allow him time to settle in, by not visiting every single day. Learning how to live alone will be a challenge too, so most of all be kind to yourself.

Hi. It’s lovely to hear from you. We are still waiting for the reply re funding for the nursing home. Hope it’s soon. Want to see him settled. Hopefully he will be able to go out eventually. His mobility is quite poor but he does use a zimmer frame. Poss he will go out in a wheelchair.
Lunch would be good from time to time. My daughters still hope he will be home at times but I’m not sure it would be the right thing to do? We will have to see.
I’m struggling living on my own but I do realize that it’s best for us both. The whole situation still consumes me as I know it does others in similar situations. One day at a time as is said. I will think of things to take though. Maybe history book of the city etc.
I do hope you are well and at least muddling through. Xx

Mum hasn’t actually been diagnosed with dementia, in fact it might just be that she’s very old (99), but she is confused, forgetful and numerous other symptoms, so probably age related. It’s just so hard to get a ‘yes’ or ‘no’ answer and as for an instant answer, no way.
‘Would you like a cup of tea?’
‘Have I had one?’
‘Yes, but it was ages ago and it’s gone cold. Would you like another cup of tea?’
‘I must have forgotten it’.
‘Probably. Never mind. Would you like another cup of tea now?’
‘What time is it?’
‘Four o’clock.’
‘What time do the carers come?’
'‘Six o’clock. You have plenty of time. Would you like a cup now?’
‘I can drink hot water’.
'Well would you like hot water instead of a cup of tea?
Long pause-------------------
‘I would like a hot drink’.
‘Which do you want, tea or water?’
‘You can make me a cup of tea if you want to’

Whatever happened to a simple ‘Yes please’?
Should I just make one and plonk it in front of her anyway instead of trying to let her make her own decision?

Elaine - simple answer ? Yes !
When caring for someone with dementia it’s one of the first things you learn; giving them a choice makes their confusion worse as they’ve lost the ability to make, a choice so don’t ask “tea or coffee ?” just say “here’s your cup of tea”.

Hi. You sound like a wonderful daughter. Unfortunately whilst my husband has been hospitalised I’ve discovered that some people do not have visitors. Their family members have lost the will to cope.Very sad. I’m not being judgemental. Each circumstance is different. I do believe all carers deserve recognition and you certainly do. Xx :smiley:

Sadly, that might just be because visiting upsets them! My MIL with dementia is in a wonderful care home, but whenever I visit it ‘upsets’ her and although she loves me to visit and take her out, afterwards she becomes very restless, and starts trying to escape (she’s looking for me I assume?). It means I have to limit my visiting. It’s not a secure home, and if she tries to escape too much, and too often (worst of all, successfully!), then she’ll be ‘expelled’. ‘Fortunately’ her dementia has progressed such that she doesn’t really have any awareness of time passing now. I’m told by the (very good) staff that when I’m not there, she settles back into the routine and seems as ‘content’ as she can be these days.

That said, yes, I’m sure there are some families where care homes are seen as places where old people can be put without having to think about them any more (until the will is read…!)

Visiting someone with dementia, especially a parent, can be so distressing as well…and ‘difficult’ in that conversation can be very limited etc. That’s why I far prefer to take my MIL out on drives in the countryside - she likes it, and so do I, and I don’t have to keep up my stream of ‘cheery chat’ to her…

I think it would be different if it were a spouse, though?

Not sure if this might ‘cheer’ you, but my neighbour’s wife developed dementia, and in the end had to go into a care home. When my neighbour visited her, so he told me, she always greeted him warmly, as if he’d only been out of sight a short while, and asked where two friends were, that they used to holiday with. Apparently she was under the impression that they were all four of them on a cruise! I’ve always thought that rather comforting…:slight_smile:

Hi Jenny. Thank-you for taking time to read my post on forum. Yes it has given me hope that hubby will greet me in a positive way. He usually does, just the odd times when he doesn’t. Every one is entititled to a grumpy day! Easy to say when it’s not happening. Am waiting for the answer re funding which is rather an anxious time. The nursing home caters for his complex needs and is very secure. Not that he could run with his zimmerframe lol.
Am sure feelings are different with spouse as apposed to others, all are very painful and heartbreaking though. I know my daughter’s worry about me as well as grieve for Dad as he was.
Hope your day goes well and will please keep in touch. Xx

Susie - classic response! :smiley: Elaine - classic conversation with dementia ridden parent! :laughing: So funny from a distance, but so frustrating at the time!

Pet, my father has quite advanced dementia and lives in a care home. He’s well cared for and the staff are very kind and patient with him, so he’s quite content there. However, I still find visits difficult, as the circular conversations are quite trying and it’s difficult when you can’t have a meaningful conversation with someone because they can’t understand long sentences or remember what you said 2 mins ago. Also, denial seems common, which adds another dimension to the frustration. Don’t be too hard on yourself if your patience sometimes wears thin, it happens to most carers from time to time, we’re only human.

I hope your funding is agreed soon. Things will be much better for all of you once your husband moves from the hospital to the nursing home. Hospitals can be nightmarish places for people with dementia, but nursing homes can be really wonderful. You are usually allowed to take in bits and pieces to make the room more comfortable and homely, so maybe that’s something you can focus on with your hubby now, as a way to look forward to better times.

Hi Shewolf
Thank-you for your reply.Yesterday hubby was quite confused at the start of my visit.Nothing too bizzare and he did seem to pick up. There had been quite a serious incident at lunchtime and I’m sure it unsettles patients and staff. I happened to mention the new place he may be going to. He knows and the nurse had run photos through on the net. The manager explained it would be good to show him. I asked him if he would like a favourite picture and wallplate of his (he chose these on a lovely holiday we had years ago). He would love them in his room he said. He already has photos of the grandchildren in hospital room and a TV I purchased for him. So we are on the way to making the nursing home as familiar as poss. If we are granted it please God.
I’ve had another very unsettled night. All sorts of thoughts run through my head. Loneliness kicks in. Oh dear, doesn’t that sound woe is me!
I will keep you updated with the decision from panel.
Hope your day goes well xPet66

I’ve had another very unsettled night. All sorts of thoughts run through my head. Loneliness kicks in. Oh dear, doesn’t that sound woe is me!

No Pet, that doesn’t sound “woe is me”; you are going through a massive change in your life and you are entitled to feel apprehensive about the future. Most of us caring for someone with dementia have been there and most of us have come through more or less unscathed.

Just take one day at a time, try not to look too far ahead and take some time out - just for you :slight_smile: