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New to dementia journey - Carers UK Forum

New to dementia journey

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941 posts
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
941 posts