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Don't know how to feel

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
I do so relate to both your posts di and Jan. I too thought the saddest day of my life was the day my darling boy went to the Nursing Home but during the ten months he was there we had some laughter, some good and some bad days. I was very lucky to be supported immensely by the Nursing and Caring Staff who looked after me as well during my daily visits. It seems one of the hardest decisions to make at the time but now in retrospect I realise that I could not - even with help - have given my husband at home the level of support he required towards the end. Sorry to read that your husband is so poorly, Jan. Loving thoughts go to both of you WIFE
 

jan.s

Registered User
Sep 20, 2011
7,354
68
Thank you Wife. I don't want to hijack Di's thread, but can only agree that the level of care offered at the Nursing Home is far better than I could ever have hoped to achieve. Roger is poorly, but happy, and that's all I can ask. He responds to me and we have a lot of laughter. The staff are great too and keep my morale up when I feel flat.

I hope you find somewhere that's right for Lex when the time is right Di. It's such a tough decision, riddled with guilt, but you have to do what is right for both of you.

J x
 

LadyA

Registered User
Oct 19, 2009
13,606
Ireland
Seconding & thirding Jan & Wife. I fought to the last to keep my husband at home too - I was determined he was not going to go into full time care. I really thought he couldn't get as good care as I could give him. But I finally had to give in this time last year, and apply for funding for full time care for him - though it was September before the funding came through and he got a place. He deteriorated so fast last year at home, it was unbelievable, and to be honest, had he remained at home, I doubt he would have survived until Christmas! Refusing to eat enough, refusing to drink, refusing to take his medication, refusing personal care, not having his pads changed, not being cleaned etc. Not to mention his aggression. The change in him since he went to full time care is beyond belief - his health improved because he was eating & drinking. He was taking his medication without a murmur. He had no objection to the staff changing him, washing him, dressing him - the uniforms & slightly clinical atmosphere made a difference for him. And of course, it's made a difference to me too. I'm getting more than an hour or two sleep at a time. I'm no longer having to lift someone who weighs approx. 70lbs more than I do, several times a day. I'm not stressed out about whether he's eaten, drank, taken his meds, going to hit me, going to become ill, going to fall again - and what if the ambulance can't come immediately to lift him off the floor this time?

None of us choose residential care for our loved ones. It comes when we realise that they actually need a better level of care than we on our own can provide. In an ideal world, we would be able, maybe, to provide that level of care while still keeping them at home. It's not an ideal world though. And to tell you the truth - from where we are now, I can clearly see that even the environment of the nursing home is better for my husband. Safer. It has wide, spacious corridors, no steps to negotiate, plenty of light, doesn't even have door straddles for him to stumble on!

It's a bit early days yet, maybe Di65 - maybe an extra day or two in Daycare would make all the difference to you, at least for another while. But you know - forewarned is forearmed. This is the time to be gathering knowledge and information, so when the time comes that you do need it, you won't be starting from scratch, when the situation is desperate. Best of luck to you both. xx
 

jan.s

Registered User
Sep 20, 2011
7,354
68
He deteriorated so fast last year at home, it was unbelievable, and to be honest, had he remained at home, I doubt he would have survived until Christmas! Refusing to eat enough, refusing to drink, refusing to take his medication, refusing personal care, not having his pads changed, not being cleaned etc. Not to mention his aggression. The change in him since he went to full time care is beyond belief - his health improved because he was eating & drinking. He was taking his medication without a murmur. He had no objection to the staff changing him, washing him, dressing him - the uniforms & slightly clinical atmosphere made a difference for him. And of course, it's made a difference to me too.
Lady A, you have described perfectly the situation for myself and Roger. Whilst I am so sorry to read the things that happened to you, I am also relieved to know that I was not alone in finding this. As my memories fade of that dreadful time at home, I often wonder whether I could have carried on longer, but reading your post reminds me of what my life was like, and of course I realise I couldn't. He too settled well into his care home, once I found the one that could meet his needs (that's another story).

I wish you well and am pleased to hear that you too are leading a more normal life (whatever that is :))
 

LadyA

Registered User
Oct 19, 2009
13,606
Ireland
Well, unfortunately Jan, you know with this disease, it only goes one way. William improved for a few months, but, while he is still more secure ( and obviously feels safer and more secure) in the nursing home, he has now deteriorated further. He's just been put on a soft diet as he had stopped eating again. He was having trouble swallowing. He's had a few nasty chest infections. He can't really speak at all. But he loves the staff, and watching the comings and goings.
 

jan.s

Registered User
Sep 20, 2011
7,354
68
Well, unfortunately Jan, you know with this disease, it only goes one way. William improved for a few months, but, while he is still more secure ( and obviously feels safer and more secure) in the nursing home, he has now deteriorated further. He's just been put on a soft diet as he had stopped eating again. He was having trouble swallowing. He's had a few nasty chest infections. He can't really speak at all. But he loves the staff, and watching the comings and goings.
Yes, it does progress and it's so sad to see. Roger has been in care for 3 years now, and has deteriorated a lot. He is on a puree diet, because there were concerns about his swallowing and aspiration; like William, he is unable to speak other than yes and no (rarely he will mimic my words) and he has now lost his sight. He is rapidly losing his ability to walk, I guess mainly because he can't see, but his balance is not good. All this and still only 66! At least he's happy.

I am so pleased though that William is settled, even though his condition is constantly changing and he sounds happy too.

Take care. Jan x