Spending more and more time in bed

[Selinacroft]

Dad still manages to get up on a good day but now spending as many days in bed as days he gets up. Once a PWD gets so poorly they seldom get out of bed, how long can that go on for typically? I'm worried he will loose all the stregnth in his legs if he stays in bed all the time, he has been getting more and more confused in the evenings and falling frequently.

 

[jenniferpa]

It's purely anecdotal, but my mother died about 8 months after she became bed bound.

I do wonder in your father's case what is coming first: is staying in bed making him weaker, or is he staying in bed because he IS weaker?

 

[SandyC]

I’m worried about my mum too. She has dementia and she is always tired but she gets through the day with the help of a carer in the morning, meals on wheels at lunch time and I get to her at 4.30 every day on my way from word and stay with her until bedtime which has become earlier and earlier and is now 6pm. It all came to a head a few weeks ago when she got something stuck in her throat. She ended up going into hospital. She was placed on a drip and had no meds, no food and nothing to drink for five days. It seemed cruel because she was so thirsty and couldn’t remember why she couldn’t have a drink and I kept explaining it repeatedly. They eventuality discovered that mum had a stomach ulcer, stage 4 esophagitis, a chest infection, low in sodium and high blood pressure. All of which she she now has medication for,
.
When she returned home she was bright and so pleased to be back in her own environment, chatty and my usual mum. I started her on the meds which she had been prescribed Esomeprazole 40mg and Amlodipine. By the morning she wanted to sleep 24/7 and I thought that I would be the same if I’d been through what she had and I’m not 80 years old. After 5 days I though something didn’t seem right because the antibiotics were nearly finished and I had expected some improvement. The doctor agreed but we agreed to give it another 24 hours. By the following afternoon she couldn’t move or lift her head. Doc treated her for an infection and she picked up but only back to how she was 24 hours previous. A week later the doc highly recommended she go to A&E for tests. After six hours and lots of tests and a chest X-ray, they found nothing.

I am convinced it’s her meds but the doctors don’t seem to be concerned, she does take citrilopram, which states it reacts with esomeeprazole but no professional seems to see that as a problem. Some mornings she is bright and I don’t know whether it’s is a coincidence but within two hours, she’s wiped out again. Which ties in to her meds kicking in. She goes to the toilet on her own but apart from that, she has everything done for her. Like all the lovely carers on the forum, I’m exhausted and teary. I’m not sure if this is how things are going to be from now on. I forgot to add that my mum does want to get going and says she feels lazy.

 

[Selinacroft]

Thanks for sharing Jennifer, I know it’s not an easy thing to discuss and impossible to predict any time frames really

Hi Sandy, Sorry to hear you are having similar worries with your mum, it sounds as though he ordeal she has been through has taken it’s toll a little more. Dad had a burst stomach ulcer nearly 10 years ago and that was the start of a long decline. He had major stomach surgery and a fortnight in HDU.
It can be frustrating when we feel something is wrong and the hospital discharge them as medically fit, dismissing any decline as dementia progressing.
I was convinced Dad had UTI when his confusion increased. He had best part of 6 months on anti biotics , including 5 weeks in hospital having them through IV for UTIs and Sepsis. He has been worse ever since he came home , bedtimes like your mum have been getting earlier and earlier from protesting that 10.00 was too early to recently wanting bed by 7.00 and the last 2 days have been completely in bed. There have been a few episodes in the last month or two where he has been bed bound for a couple of days. Today he is sitting on the edge of his bed again, but once he gets a bit better and feels like he wants to get up, he will fall again before long and so the cycle repeats. The gaps between each fall are getting shorter and shorter. Like your mum, Dad can be reasonably awake for the carer and then sleep most of the time for the rest of the day.

 

[SandyC]

Dear Selina, Thank you for your reply, I only saw it this morning. I went to see my mum yesterday on my way home from work. I arrived at 4.45 to find her sitting in her chair in the dark. She’d been there all day, only eaten a few mouthfuls of lunch and a tiny amount of water. She’d obviously been sleeping all day. I phoned the doctor because I still suspect it’s her meds. On the day I brought her home from hospital she was bright and happy. The following day she started sleeping continually. The first couple of days I put down to recovering but we are now at three weeks. The new meds started on the day she got home and the doctor has agreed that it will be okay to stop the two new tablets for 48 hours and see if there is any improvement. I’m pinning my hopes on the next two days. If it doesn’t make any difference, I will have to accept that this is how things are going to be.The thing is that she feels unwell, wants to get better and thinks she’s being lazy. I can’t help thinking that if it is her dementia it would have been gradual and not over night and would she feel ill? The hospital gave her every test and nothing flagged up. It’s difficult with a dementia patient because they can’t remember what sort of day they have had or discuss their symptoms. You’re so right about it being a cycle.... Illness,fall,hospital,recourperation repeat. All intermingled with doctors visits, sleepless nights, endless worrying and continued hope that our loved ones will have a ‘better day tomorrow’. I’ll let you know how I get on with the medication trial.

 

[Selinacroft]

Hi Sandy
How did the change in medication go ? Hope your mum has had some improvement.
Dad has been in bed now nearly for a whole week, one day he sat in his chair, yesterday he sat in his chair for an hour and a half, today been in bed all day. I think that's the hardest bit of caring to deal with - it's left me feeling a bit useless as a carer, not being able to make him well enough to sit up. I know it's not my fault but as a carer you always try to fix things and make the best of what you can for the person. I feel more guilty going out doing things when he is alone at home in bed than when he's in a chair and it's equally harder to spend meaningful time with him and I feel that I just keep checking up on him and making him have cups of tea instead of doing normal things or having normal conversations. He can't hear a word I say even if I try despite 2 lots of hearing aids.

 

[SandyC]

Hi Selina, I’m sad to hear that you are feeling the same as I am. Every day I aprocach my mum’s front door hoping things will,be slightly better and fearing that they will,be the same. I too feel useless, it’s a problem that I can’t fix and we must be fixers otherwise we couldn’t be carers. One day this week I arrived and when I saw things were the same I wanted to cry. I sit with her most of the day, watching her doze, having the same conversations. She’s not interested in the tv and to be honest the adverts are driving me insane. Funeral plans, animal,charities and riser recliner chairs aaahhhh! All the while my head is bursting with things I need to do in my own home. I keep all the plates spinning at mum’s home but they all crashing down in mine. I’m the opposite to you in that I feel guilty leaving mum in her chair because when she’s in bed she sleeps so I rush home, do a couple of jobs, and rush back to wake her a couple of hours later. Does your dad feel unwell or just excessively tired? There are many things they have tested my mum for, B12, iron and Sodium all of these will make a person very tired. Has your dad had his bloods tested?

Thank you so much for asking about mum and her meds. They don’t seem to have made any difference it’s taken me a few days but I seem to have narrowed my mum’s symptoms down. She is excessively tired, she goes from freezing cold to very hot in what seems to be an instant, she gets short of breath and one more thing, she seems to have a constant headache. Yesterday I gave her paracetamol three times and by the time she went to bed she said it was lifting. I know her symptoms sound like flu but it’s been going on for three weeks now and she doesn’t have a temperature.

I’m going to speak to the doctor again next week, I really feel like a nuisance when I keep phoning them but it’s so unlike my mum to say she doesn’t feel well. She’s the opposite and usually says “don’t call the doctor, let’s see how I am tomorrow”.

I’ll keep you posted and please let me know how your dad is doing.