Hi, I'd like to introduce myself.

[chrissieL]

Hi, I'm new to TP and to being a carer. After a long spell in hospital for a urinary tract infection, my husband ( who is 28 yrs. my senior) was diagnosed with vascular dementia. Suddenly I was swamped with Social Workers and O.T.'s and my life changed overnight from being a wife to a carer. I've found this all very frightening and although I have known for about six years something was very wrong with his memory and about two years that he was getting frightened and panicky in strange surroudings I suppose the more normal times were cancelling them out and I was putting things on the back burner!
Since the stay in hospital his condition seems to have deteriorated quite a bit, his mobility is returning a little, but the confusion is worse.
I have managed to get some help together in the form of home care and day care, but all he really wants is to be with me. I know that I personally could not cope with staying at home with him 24/7 and although he hates the day care I am persevering and our G.P. is supporting me. I feel very cruel and selfish sometimes because he is accepting it for my sake.
I'm very frightened about our future together and I hope to learn more from people on here, what I have read so far has been a great help.
Sorry to have rambled on for so long, but I needed to rant I guess,
thanks for listening,
Chris.

 

[Brucie]

Hello Chris, and welcome to TP.

Fear, guilt, feelings of selfishness and cruelty, etc are all common currency in our world, the world of the carer. So please don't worry too much about feeling that way.

You seem to be getting good support and the fact your husband goes to day care at all is good. So often it is a struggle to get them to go.

Since he is there, albeit not entirely happily, do try and keep up the regime. You do need time to yourself.

Do use TP as much as you want, and at any time of day or night - there is generally someone on at all times, and if not, you will get a reply soon after.

Best wishes

 

[chrissieL]

Thank you Bruce for welcoming me.
Regime is a good word, that's exactly what it feels like, it makes us both unhappy a lot of the time. My husband was a proffessional man and he sometimes understands what is happening to him and gets frightened and distressed, we both do. It's very difficult for us both to accept because he has periods of clarity and sounds just like his old self, that's when it's hard for me to cope with sending him to daycare and I wonder if it's the right thing. I do understand that it will not get better and as time goes on he will definately need the care more, it's now that's hard!
Chris.

 

[Izzy]

Hi Chrissie
Although my husband isn't as far down the line as yours I can empathise with you. My husband is 21 years older than me and was diagnosed with AD 4 years ago (although there were signs before this). Fortunately for us he hasn't deteriorated quickly and we are still enjoying a reasonable level of life together.

I can understand how you must feel about becoming a carer when you're so much younger. I know you will find some fantastic help support and advice from this site.

Take care
Izzy

 

[Jude]

Dear Chrissie,

Welcome to TP. There are several forum members who are caring for spouses and I know you will receive a huge amount of support and empathy from them, as well as from all other carers dealing with parents and various other relatives.

Great to have you aboard.

Best wishes,

Jude

 

[susie]

Hello Chrissie
I'm a fellow Salopian just north of Shrewsbury going through the same as you although my husband is only a few years older than me. He is now in the middle stages but I've been through all the emotions you are experiencing now. He will feel anxious and want to be by you as you are his constant rock in the frightening world he is experiencing. Guilt seems to be the common bond we all have on TP but you must try to make your own life and with the help of your supportive GP it sounds as though you are on the way with day care. My husband is one of the early onset dementia patients and the facilities are very good in this part of Shopshire. If you want someone to moan to send me a private message and if you want, we may be able to meet up. Keep posting on TP as a group hug does wonders when you're down. One phrase you will learn from Norman is "one day at a time". It's taken me 2 years since diagnosis to finally get to that point so enjoy the good times and in the middle of the bad times- tomorrow is another day- it may be better.
Regards
Susie

 

[Norman]

Hi Chrissie and welcome to TP.
I care for my wife and when I first was able to get sitters and get out for a while I felt guilty as hell.
The guilt feeling does ease off a little in time.
Post whenever you feel the need
Best Wishes
Norman

 

[connie]

Hello Chrissie and welcome aboard. So pleased that you get some respite day care. My Lionel goes to day care, and whilst he does not always want to do this, in his very lucid times he says " I am in control and I can do this for Connie"

I take this to mean that although he knows his condition, he also realises that he is losing a firm grip on life. Going to 'day care' is something HE can do, HE is in control of, not the desease being in control of him. Hope this makes sense. Connie

 

[chrissieL]

Thankyou Izzy, Jude,Susie,Norman and Connie, it was lovely to read your messages and know you are all out there and have experienced the same mixed up feelings.
For the last week or two my husband has been very depressed and is repeating the same things about not wanting to go to day care, hating it there, hating his life and wanting to end it. It's becoming very difficult to talk him round and last night was particularly awful, I'm at my wits end. He even tells me to 'bung' him in a home so that he can be out of the way. I worry about what I will do if he refuses to go to day care as home care can only do small blocks of time and I know I won't be able to cope with that. I also have an elderly mother that I need to visit, she's managing o.k. at the moment, but that's not the point she still needs to see me regularly. That's apart from the bit of life I need for myself.
This all sounds very selfish and whiney, but it's how I feel,
thank you all for listening,
Chris.