New to dementia journey

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780 posts
Hello Jun_
It's me that should be welcoming you, and I do!
I've been with the forum since March 2016, and it's been a massive support to me. I hope you find it is too.
Sadly, my husband won't recover.He is in a nursing home because of strokes and vascular dementia. A long emotional goodbye.
Thank you for your thoughts though.
What a roller coaster day. Attended the funeral of one of the residents. 3rd one now sadly. The husband of the last funeral kindly attended with me. Very emotional for us both. The man whose wife it was today looked so very frail, had to be helped by 2 of his family. She had Alzheimer's for quite a while, was in another home, then the nursing home where hubby is for over 2 years.Its been a long goodbye for him too.
Then G kindly took me to hubby. Obviously not easy for him.
Visit was good. I chanced telling hubby I had been to a funeral. I had a lovely spark of care from him. I said I need an extra big kiss today, and got one!! Could have cried all over again, but didn't. He proceeded to tell me he had to go to one the other day bless him. I didn't venture to ask, just said it's a good job you had your hair cut the other day, which he agreed with. This confabulating with vascular dementia sufferers can really take you by surprise, even though I experience it regularly.
So, I'm emotionally worn out this evening.
Haven't posted for a while
Things had been ticking along ok, with the trials and tribulations of little niggles at the nursing home which I or my daughter jump on and get sorted. Usually to satisfaction.
Now, poor hubby was taken back to hospital last night. Impacted bowel. I'm hoping his potassium levels aren't very low again.
I was very frustrated at the home yesterday. The nurse called for out of hours doctor to phone. This didn't happen for hours. I requested that the paramedics were called, but she said let's see what the doctor advices. I explained the symptoms were as before, ( twice) and he will need to be admitted to hospital. Hours later, the on call doctor said he would send someone out. A few more hours went by, for the doctor to see hubby and state he needs to go to hospital! ( The nurse wasn't a regular one).
So I've just emailed the general manager , who is managing hubby's home as the new manager left after 3 month?!. I've stated if hubby has these symptoms in future, I want paramedics called, not wait for doctors. It happened the before, and saved alot of time and stress.
So, here we go again.
How exasperating! I suppose the diffierent nurse was following guidelines or whatever, but it still makes it infuriating! I hope the directive you've issued now stops that nonsense happening again (better, of course, that your husband doesn't have a further episode of course).

I hope things pick up for him in that respect re the hospitalisation.

It's akin to being a parent who 'knows' something is definitely wrong with their kiddie, and what needs to happen, but the medics insist on doing it 'their way' instead of listening to US!!!!!
Hi Pet,
Sorry to hear there is more than the usual niggles happening again.

More worry for you, thankfully he has been admitted now.

Poor hubby. He'll be more comfy once they have emptied him out. Doesn't the home keep a record of bowel movements? This should be preventable. Are they giving him enough drinks in this very hot weather? Keeping fingers crossed re his potassium levels.

That nurse needs to realise she may be trained in nursing but you are the expert re hubby.

The new manager has left already?! The management/ owners need to be working harder at recruitment and retention.

Yes Melly, the home does have a 'poo' chart record. DD2 has questioned as to why no one queried giving continued laxatives when he has very loose stools for 2 weeks! Apparently the nurse's silence was deafening. He had overflow because he definitely has impacted bowel, plus he has low pottasium levels again, plus a nasty chest infection. Poor hubby, he is more confused than ever. I cried outside his room today and had to pull myself together.
The last manager was very good as far as I am concerned. But, from what I gather, she kept rejecting new residents, because she felt they were unsuitable? Of course, the owners want the beds filled.
So Im hoping the antibiotics will kick in soon, the bowel will be more comfy and the pottasium drip will up the levels very soon.
I'm afraid the home are not keep records up to date. Not helpful. The nurse who didn't phone the paramedics, was almost teary today, as if she had known more, she would have. She is a nurse from one of the other units. Staff shortage in hubby's unit again.
Pet, tears are allowed at times like this, in fact they're essential to let it all out in such a difficult situation, you just can't bottle it up indefinitely, and you have good reason to be aggrieved at the lack of care in the home.
I think you should contact the Care Quality Commission and let them know what is going on, as your OH won't be the only patient not getting the best possible care. You can just ring them up, there's a central call centre which passes information on to the local inspector.
Don't worry, they will not focus just on your OH, or let the home know why they are concerned. When my mum had a problem, it was dealt with very well indeed, great diplomacy, aimed at making sure the service was supported to be better in future.
If this has happened to your OH, when you visit regularly and are very concerned for him, what is happening to those who have no one to speak up for them?
Hubby has been discharged back to the home. DD2 and myself are having a meeting today to discuss the discharge letter, the instructions from the hospital Doctor, the issues that have slowly been building up. My daughter has an agenda and copies for the named nurse and general manager to have. This is the correct step to take before an official complaint is taken out.
I am anxious and sad that its come to this, after over two years of satisfactory care from the home to my husband. My faith in them has taken a bashing and it will take some doing for it to build up again.
I could go into reams of information but wont. Just want the best for my husband as he rightly deserves. I also need that my family can get on with their lives, knowing that he is well cared for, can make the best of visits without the added anxiety.
Pet, good luck with the meeting, so good that your daughter is going with you.
Remember, that you are only asking them to do what they should be doing anyhow. Make it clear that if things don't improve, making a formal complaint is the only option left to you.
Tonight and tomorrow you are going to feel "washed out", I know and expect this feeling now, so take it easy, and try and do something to lift your spirits a bit, even if it's only a special treat in a local coffee shop.
The meeting.....well Im hoping DD and my concerns were heard. The manager admitted that hubby's records should be more up to date. To be honest, she was still flicking pages back and forth . The named nurse lied unfortunately. Trying to defend herself. Not a damning lie, but nevertheless.
I worked in a home for troubled teenagers, and was used to reviews meetings etc but I forgot how you have to guard against twists and turns!! We do have a plan in place, and another meet up in a month. I want records on my hubby up to date, so that any nurse can look at them and know what to do. Communication with staff is a problem that needs addressing,but I can't do anything about that. I am drained BB and to be honest, have a feeling I'm failing hubby?? Let's hope the meeting moves things forward. I'm not a fusspot, in as much that if he isn't shaved, or has food on his top, I moan, as some relatives do. It's his well being I care about. Oh dear, I think I'm overtired, and rambling
780 posts