What’s happening with my mum.

[Eleanor6]

Apologies in advance this may be long. Dm is 88years old and has complex health problems, she has dementia and has been in a NH for 3 years with many many ups and downs. 3 weeks ago she took a turn suspected stroke with elevated BP. As per plan she was monitored in home but after a week transferred to hospital for bp management. Scans shows old infarcts and an aspirate pneumonia, she was transferred back to NH with antibiotics.

During the last few weeks she has been unresponsive due to mini strokes but always comes back, we have done night vigils as she has been so weak. Yesterday was a tough day she was unresponsive for most of the day, I was there until late and she was barely responding. This morning when I came in she was awake, didn’t know me but had breakfast and now sleeping.

Thank you for reading, I suppose I am reaching out to see if anyone has been through similar and how did it turn out? I can see this situation going on for months and it is so sad to see her like this.

Your Mother must be quite a strong lady to keep recovering from these mini strokes. My Mum had a bad stoke whilst in a care home and we think it happened during the night and wasn’t noticed until staff went in at 6 am, she went to hospital and unfortunately died 2 days later.

What would you like to happen?

Maybe talk to the staff about why she had antibiotics for that infection? Would they give them again? If so, why? What are they trying to achieve?

If they don't seem to know, try to go to the NH when her GP goes there, and have a discussion about what's in her best interests.

My mother was very similar. She had dementia but was cared for at home by my dad, family and private carers. Food was withdrawn at the end of November because she was choking on it and it was causing significant abdominal pain and fluids the last week of January.
I called my adult children on many occasions to say she was dying. She rallied multiple times until she eventually died mid February.
It is incredibly difficult to witness and my heart goes out to you.

You need to have a discussion about a DNR order and with a doctor as to what care she will be given. These can be difficult to arrange but be persistent.

Thank you for the replies, there is a DNR order in place and we had agreed no hospital transfers but when her BP was so high they insisted and once in hospital scans and X-rays were done.

The Dr says she is unbelievably strong but has said no more hospital, the ups and downs are very hard… it’s a limbo if I am not with her I feel bad but I have a family to
mind also.

My mum was 92 had dementia and was in assisted living, she had a fall in the November and ended up in hospital. She kept rallying and declining, one day she was unresponsive and the next when I visited she was eating heartily. I remember what a roller coaster of emotion it was ( some family members refused to visit as so upsetting ) she eventually died in the February.
Sending a hand hold and 💐

Thank you so much, it’s the rollercoaster of emotions, I am just taking each day as it comes. X

@Eleanor6 , I think the road to the end of life is often very up and down and that can be incredibly difficult to deal with emotionally. If you stand back and look through the trajectory is always down as each blow leaves a lasting impact. I agree with other posters you should be able to insist that only interventions which keep your mum comfortable are permitted perhaps her GP could convey this to the nursing home. My heart goes out to you.

Oh god yes. My grandmother was like this for five years. She had multiple falls, seizures and strokes and each time we had to go to the hospital they told us that she wouldn't make it through the night. It was so stressful and took its toll on the family. I know this sounds really hard, but it got to the point where we stopped going to A&E with her and asking the carehome staff to go instead. Then the carehome would call out a doctor or paramedics and not actually send her to hospital as it was too distressing for her as she had a DNR anyway. She wouldn't eat, apart from yogurts (the fortified ones) and I really can't believe that she held on for so long. She finally passed away in 2020 right in the middle of Covid, but the damage was done and my mum died a few months later. I really do think that all the stress from my grandmother is what caused my mum to die.

I know what you're going through OP. My mum has dementia (stage 7) and has been in a home for two years. In September she went into hospital twice because she was unresponsive. Both times we thought she wouldn't come back but she did. A scan showed evidence of several mini strokes so we know that that is likely what is happening. Mum doesn't have the capacity to express her wishes clearly but in conversation with the hospice nurse it was agreed that she should not receive any treatment "save what is necessary for dignity and comfort". So if antibiotics make her more comfortable that's fine but no investigations or procedures beyond comfort and dignity.

Her heart is strong but she is growing weaker and weaker. Two of our adult children have had babies recently and they want to introduce the babies to her but other DC are too upset at the change in her to visit again.

My heart goes out for you, we have such little knowledge or exposure to death in this culture, rarely do people get in bed with a horlicks and a clean nightie after a day in the garden, drop into a peaceful sleep and just not wake up. Death unless it is sudden, can be complicated and messy and painful, and take unexpected turns, and you can't know how it's going to go, very much like birth.

Humans don't do well in limbo and you're in a very uncertain place, and you understandably want to know the unknowable. Look after yourself, get as much support as you can both practical and emotional, because this is an exhausting time for you. Try to take each day as you find it, and you will get through this, losing a parent is a massive transition.

Its hard to let go but you need to think of her dignity and her right to not be in pain. Prepare to say your goodbyes and make sure the doctors just make her as comfortable as possible.