Who cares?

[Lonestray]

Hi fellow carers, it is now almost 2pm and my wife is asleep. To-day was the Community Nurse Assistant's monthly visit, meant to be at 10.30am, no one came! This is the third time this year the visit never meterialised. At least the other times I received a phone call around 09.30am the morning of the appointment saying she wasn't coming, this time nothing. At her last visit I questioned the purpose of her visits: "To see your keeping OK, and a chat" she was unaware my wife had been rushed to A&E two weeks earlier to be resuscitated. No doctor has visited my wife in two years except at A&E. Three weeks after the first visit a letter was adressed to my wife, saying your GP has requested you have an X-ray and to please bring this letter when you report at the time and date. My wife can't move nor speak! When I informed the hospital the appointment was cancelled. Since the second hospital visit last month there has been no follow up.
Right now I realy don't care if I ever see another medical person relating to my wife's Alzheimer's. I expect I'll have to spend time chasing up her flu jab, it took me three weeks last year. I ask myself could it be the Doctors got it wrong four times in as many years when they pronounced she hadn't long to live. The hardest years of caring for her were the 3rd to the 7th of the 11 years. The most stressful 7th, the 8 to 9hrs a day at the NH. Now I'm happy as my wife is doing well and to-morrow I'll take her shopping for the second time this week. I think it's a crying shame no one appears interested in how someone can transform from skin and bone four years ago to a chubby healthy person. Who cares? The carer. God bless. Padraig

 

[Kathleen]

Padraig

With a husband like you, what more could your wife ask for.

You are an inspiration. Yes, I agree that at times our loved ones just don't seem to matter any more.......except to us, of course.

Kathleen

 

[nicetotalk]

Hi Pedraig

Just wanted to say what a wonderful husband you are, my dad cared for my mum for the whole 8 years she had this awful illness at home. When we use to visit we would ask has any one been out tosee my mum. Most times it was no it is if no one want s to know. H e had a social worker but most of the time she was rather ill or on holiday. I understand what you mean does anybody care my mum had gone in hospital for a few days and ask if the social worker or anybody else knew. She was sent home with a cathata in for 2 days befor anybody came out to remove it. What is wrong with them that are employed to help i just dont know. Keep doing what you are doing it is only the carers that truly understand what a loved one needs.

take care kathy

 

[Lonestray]

Thanks Kathleen and Kathy for your kind words. I must say every time I read the posts on TP I feel so sad not being able to do anything to change so many things I found wrong in the treatment and care of thoes with Alzheimer's. Then again I'm very fortunate in having taken the decision to do things my way. You name it my wife and I have been through all the same things most others have experienced. The swollen feet, cathata, morphine patches, drip feed and crying when I visited her in NH, preasure sores, oral thrush etc, etc. At one of her stays in hospital she was on a drip and mask, the nurse told me she would not eat: "Please give me a yogurt" I asked. I fed it to my wife, the nurse thought it amazing, I asked: "How do you think a child of yours would feel if I took it to a strange house and I tried to feed it?" I was later told there was nothing they could do for her and would move her to the geriatric ward. At this, I insisted on taking her home thinking then (June 2003) to die by my side. The one thing I'm determined to do is to record what I found wrong with the way Alzheimer's is treated. Carers should not have to go through the hell I was put through but they still do from posts I see on TP. I read the American expert say "it is not possible for any one person to care for someone in the final stages." Also it's near the end when they lose their speech and generalized rigidity is present."
To that I say they are wrong on both counts, if only in our case, these symptions have been present for well into four years now. To-day I strapped her body and legs into the w/chair, lifted her into the car and took her shopping. She repaid me with the most beautiful smile. Please don't missunderstand me, I'm only too aware each carer's situation is different, thus it will be only a very few, if any who can care alone. But there are tips I picked up along the way which improved both our lives. God bless Padraig.

 

[Brucie]

Also it's near the end when they lose their speech and generalized rigidity is present."

I am very wary of any generalisations with dementias because when the brain is damaged, seemingly pretty much at random, there is no predicting exactly what functions will be compromised, either singly or in combination.

The so-called 'experts' should really know better, though I suppose they categorise their expectations on the small sample of people they each see. If they only see people in the final stages who have this or that, then they expect only that group to be affected. I'm always wary of experts.

Jan's speech went 2-3 years ago at least. She has been rigid frequently for a couple of years, making dressing her difficult for the staff at her care home. Jan's 66th birthday was two days ago, and she is probably looking the best she has for several years - the care home is a good one. Today, I was struggling not to be damaged by her strength as I tried to raise her to a sitting position on the floor to sip some tea.

On Tuesday when I arrived at the home I must have looked world weary. Jan's GP, who visits daily, saw me and said "what's up?". I said "Nothing - it has been 16 years since Jan's symptoms started and I have been caring for her; I guess I'm just weary". The GP said "that long? I always expect people with Early Onset dementia to succumb more quickly."

Clearly not the case.

I don't believe we are anywhere near the end at present, something that elates me and scares the h*ll out of me at the same time.