Respite

Once more it's the elderly that causes me the most sadness.

We were sent to an extremely demented woman in her nineties, she lives with her husband and, while in the kitchen, had collapsed.

When I spoke to the husband he thought that she was about to die.

Not any more though, she had taken a shine to me and was grabbing my hand, singing songs and pretty much dancing around the living room.

I tried to get the story of what happened from the husband, but it was quite hard as our patient would keep interrupting us with streams of confused conversation and singing of hymns.

It was in the ambulance that I saw her husband bury his head in his hands. His eyes were wet with tears.

He was the only person caring for her, and so, for twenty-four hours a day, seven days a week, with no weekend breaks and no holidays he was nursing this confused and agitated hyperactive woman.

They had no other relatives to help them out, social services had arranged for a cleaner, but he did most of the cleaning for himself so there was little for the cleaner to do. Three or four times a night she would wake him up so that he could take her to the toilet, he hadn't had a good night sleep in years.

“It's like looking after a baby”, he told me.

He had to run down the shops when she was asleep, and he constantly worried that she would wake up and find herself alone in the house.

Sometimes she would get angry and hit him.

Once more I found myself more concerned for the relative of our patient than for the patient herself. Thankfully one of my favourite nurses was taking my handover and I let her know that I thought that the pair of them could do with some more effective social input, perhaps respite care for her once a week so that he could have a day when he wasn't caring for her.

11 thoughts on “Respite”

  1. It's sad, and I know, I've done this. Gave up nursing to look after my mother in '94, and she got dementia in 2005, which made the prev decade of looking after her physical infirmity look like a picnic in the last yr of her life.It wrecked my health, but, I couldn't not do it and be true to myself, good on him I hope he gets the help he needs.It's hard to accept help you feel like you've failed somehow, but in the end, you are only human.

  2. We often come across the relatives at the end of their tether. After one more incident they just couldn't cope with.The social provisions for people like this can be extremely limited but I find the hardest part is persuading the carer that the help is there and they should take it. I believe they feel guilty about passing on the work even though they are physically, mentally and emotionally exhausted.

    I hope this gentleman gets the help he needs to see her through the final part of her illness without becoming ill himself

  3. Tom, you did a good thing talking to your nursing friend to try and get him some respite…Although my husband was never had dementia, the need for 24/7 care for him during his last years (He died in 2004 after a lengthy bout of renal failure, subsequent dialysis for 9 years, and the eventual complications that eventually took his life.) took its toll on me in many ways:

    – I stopped taking care of myself. I gained a lot of weight.

    – I didn't sleep well at all. I was lucky to get 3-4 hours of contiguous sleep, especially in the last 2 years he was alive.

    – My own health problems, including asthma, worsened

    – I didn't exercise AT ALL for around 4 years. With the exception of running around working EMS at a baseball stadium.

    – Emotionally, I was a wreck. I put on a great face for people around me, but I knew inside how I felt.

    The interesting thing was, I *KNEW* that what I was doing to myself was wrong, but I figured I could handle it. BAD IDEA! It took a while after he died for me to really realize the toll it took on me. I have since changed my life in many ways, trying to reverse some of the damage I managed to inflict on myself by not asking for help. When he was hospitalized, I would get some better rest, but never enough to feel whole. And once a year, I got a few days “off”, attending a conference. It was never even close to enough.

    Now, I exercise, I have dropped over 40 pounds (Got more to go, but I am getting there!), I got a gym membership for myself and my kids, which I use! I try to get quality sleep (Still working on that one – the gods of Benadryl sometimes help!), my asthma is under TIGHT control, and I make sure to have fun! Emotionally, I am in great shape now. Yes, I still miss him incredibly, but I have moved on in my life. And I've shown my now adult children that they can, too, which they have.

    Interestingly enough, I started dreaming again last year (Yeah, it took that long). Wild, crazy dreams at first… including some nasty nightmares. Now they are starting to become what I consider “normal” dreams.

    (Climbing on soap box)

    If you know of a friend or family member caring for a loved one 24/7, offer to help them once in a while. Take care of their loved one for respite, help them to arrange to get respite care, take them out for tea, coffee, a movie… talk to them, get them to vent. THEY NEED TO! They may not know or (for those of us with the background) admit it, but the stress of this hurts and kills people everyday.

    (Climbing off soapbox)

  4. it is agony, seeing the person you love change into someone you do actually hate at times.That's part of it as its been said, the other person is not there, except in brief flashes and it makes your day if they act like they used to just for a few minutes.

    I could write a book on it, heh, but now i remember the good times and the bad and just feel so sorry for anyone else going through it

  5. Guilt. People caring for the demented see the person they loved disappear but not die. Sooner or later the thought surfaces: if only he/she would die. Then the guilt. They can't forgive themselves, so they beat themselves up by refusing help; it happens time and again.Sometimes they snap. Then it's a murder/manslaughter charge, and a judge saying “how could you be so cruel to this dear old person?” Sometimes they kill themselves as well or instead.

    Little tragedies that go through A&E every day, no-one notices.

    Sometimes I have been on duty when an Alzheimer case presents at Casualty for the third or the tenth or the fiftieth time, with “chest infection” or “constipation” or some such. Accompanied by a relative with drawn face. What it really means is, their carer is at the end of their tether and the GP can't help. So shuffle it off onto the Hospital for a forty-eight-hour respite.

    And sometimes, when the houseman has shot the patient up with antibiotics, or the crash team has bounced in and resuscitated, they go out proudly to the relatives and say “Good news! your husband/wife/parent is going to be all right!”

    And you can see the carers' faces drop.

  6. Right now up and down the United Kingdom there are people looking after loved ones with little or no help or support. The majority of them dont moan or complain and continue to do their best for their loved one even when they themselves are not 100% right. I for one have the utmost respect and admiration for these carers and stories such as the one you have told increase that respect and admiration. There is at least some decency remaining in humanity.

  7. I work in a respite unit for people with learning difficulties and so i can see the positives of this kind of support. The benefit of a weekend without having that heavy weight on your shoulders can do you a world of good. It also gives the client a brake away from their usual routine. Hopefully this man can get the help he so desperately needs.

  8. How sweet! human quality of some people is really admirable, because love is not just being a good person, if any more people like that man who would be different planet

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