Phone call to care home re assessment
Phoned the care home at 11.30am, no reply. Phoned again 11.45am, in luck this time, and passed on to Eileen who will be doing the assessment. It will not be today as they are short staffed. She hopes tomorrow but depends on the staffing situation. Failing that she said definiitely Monday. She will phone me tomorrow. I asked when he would be moved to the care home, she replied that providing he is accepted... it can be very quick, withing two days.
We had a really good chat, she asked a lot, also told me what information she had, not a lot, but much of it wrong!!
They were told Henry has a pacemaker which is not correct! Our GP had him tested for his slow hearbeat and had decided to hold off and "watch and wait".
They were also informed that I have MS. Not true! I had to explain that I have lymphatic cancer a low grade indolent follicular lymphoma (Non-Hodgkin's Lymphoma). (Actually mixed grade, started off aggressive for a few years then became indolent)
Plus a bad lymphoedema leg caused by the lymphoma which damaged my groin lymph nodes and lymph vessels. Also that I had avascular necrosis (AVN), bone death caused by an interruption of the blood supply to the bone. Part of my femur and all of my hip joint were destroyed as the condition went undiagnosed for over 3 years. (told it was sciatica although I knew not that) Thought to have been caused by radiotherapy treatment. Latterly in a wheel chair. Surgery got me out of that but left me with pain and limited mobility hence the need for a 3 wheel walking aid.
How can whoever - Social Worker? - get things so wrong?
The care home nurse also asked a lot about Henry's diabetes, and I told her straight this has been mismanaged from after surgery in November and throughout by all three hospitals. They stopped giving him his diabetic tablets after surgery because his glucose levels dropped to 7 - due to not having eaten from lunch time the day he fractured his hip, on pre-op fast next day but surgery cancelled in late afernoon. (possibly a small meal then) No food the following day of surgery (heavily sedated, out for the count, nor the day after or only small pureed meals, and he was being sick. His meds should
NEVER have been stopped. Possilby reduced when lower but not stopped. They have been controlling the diabetes for 7 years. After he started taking meals his glucose levels were very erratic and in 20s at times. Then supposedly stabilized at 10 (not low enough) by a diabetic specialist called in only 2-3 days before moved to present hospital on 5 January.
At the Community Hosptal I was told when I enquired he was "fine" or "alright", only to discover a few weeks ago that his glucose levels had steadily been rising well into 20s and eventually the 30s, as high as 36. But that was allowed to happen, nothing done until crisis point.
Anyway, writing too much and repeating myself re the diabetes. But the care home nurse was shocked that I had never been informed of this. She twice said "Really? Really!" and I replied "Yes really, I have not been informed about anything, and when I had asked only received vague minimal replies." She said "If your husband does come here you will be kept informed of everything".
Also discussed his dementia and other things. She is interested in what I have written about his health and care needs and will have a copy from me when we meet.
I found our conversation very reassuring. Having dreaded that in a care home I would be kept well at arm's length concerning being informed as has happened in all three hospitals over 6 months.
Sorry to write so much detail, but it was such a relief to talk with someone about it all, and to gauge her level of interest and concern, and that she sounds knowledgable about both diabetes and dementia, also how diabetes can affect dementia. Apparently someone with dementia going onto insulin injections can be problematic, which our GP had also said and she was trying to keep the diabetes under control and prolong a stage when insulin might become necessary.
The care home nurse also sounded understanding and sympathetic which brought tears to my eyes.
After 6 months of being ignored, not meeting a doctor until a few weeks ago, and then I had to ask, to be told that it is important for them to receive all the information I can give them, is such a complete change.
She wll definitely phone me tomorrow as soon as she knows what is happening. Such a sense of relief now, and I feel more positive about the move to the care home. Here's hoping.... the only niggling worry is the repeated 'providing he is accepted.....'or words to that effect.
I now know the Community Hospital has an EMI unit where those with dementia who are "not suitable" for a care home go, and I would not want that for Henry. Positive vibes please that they do accept him and that he does settle in, and that the verbal aggression of late towards men in the sitting room does not go against him. So far no physical aggression in hospital that I know of. I have asked. Only towards me at home, and only occasionally, and this had lessened over the past year or so. It was the verbal aggression which was constant. Only ever towards me, never anyone else.
I am writing far too much. This post is rather garbled, I must calm down.
Thanks for listening. Thanks for your posts and support, thanks for being there.
Love
Loo xx