Alzheimers angst and guilt

[Roadtosomewhere3]

It's the first time I've posted on here. I just feel the need to offload to any people who may have had similar experiences or who may offer a supportive ear.

My mum has Alzheimers. She was only diagnosed a year ago but the last 6 months she's gone really down hill. I feel like my brain is finding her decline really hard to process and I'm feeling a lot of guilt.

In October last year my mum started having really vivid hallucinations. She was trying to get out the house at all hours to try and meet this man that she'd imagined. She was convinced he wanted to marry her. At the same time, my dad was really unwell and got admitted to hospital. My sister and I were trying to look after my mum but we both have small children so social services suggested that she went into a respite care placement to try and stabilise her hallucinations.

While she was in the care home it was discovered that she had a blocked bowel and was admitted to hospital. She also contracted an infection while she was there which completely knocked her for six. She was in hospital for 3 months in the end.

It was decided that she couldn't come home as she was too frail so she was discharged to a care home. She's been there a few months now.

When I go and see her now she's totally different to how she was a few months ago. Doesn't really talk or recognise you. I find it completely soul destroying that her decline has been so quick and I feel like my brain is struggling to catch up. Every time I go, I hold it together then cry all the way home.

And the other thing is that I can't get over the guilt. The guilt that she's in there when I few months ago she just had mild memory loss. I feel like I should have spotted that she wasn't well and pushed for medical care rather than respite care. I just feel like I've completely failed her.

How were you to know she had a blocked bowel? You allowed her to go into a care home who were better placed to understand these things, so indirectly you did get her the medical help she needed.

Yes, it is bad when you lose a loved one so quickly. But for them, quick may be preferable to slow.

There’s nothing you could have done to alleviate her Alzheimers

So sorry OP. My mum also had Alzheimer’s and declined quickly so I can relate to a lot of what you are describing. It’s very sad that they do decline quickly once they are in care as they don’t really have to do anything for themselves. But she might have declined the same way whichever type of care you got. You did the best you could at the time and had to also try and keep her safe. Please don’t think you’ve failed her. You are doing the best you can. Alzheimer’s is a cruel disease and you feel so helpless watching someone go through it . Look after yourself at the same time, and get support from those around you that love you.

@Roadtosomewhere3 , I’m so sorry you’re experiencing this. Dementia is a bitch. My mum had Lewey bodies and it was horrific for her and those who loved her. At the same time my dad was diagnosed with a brain tumour, I was constantly in one hospital or another quite often the hospitals were miles apart.
I have MANY regrets but no one gave me a road map to follow. I did my very best but you can’t win against that dreadful illness. I think the body starts shutting down long before death and my mum was skeletal towards the end, she just didn’t eat much at all. Would your mum be able to come home with 24 hr care? She may be eligible for NHS CHC ask the GP for a referral to a hospice, they were super helpful for me. Make sure you register as a carer too because you are and doing so will open more helpful doors.
Do try and find some time for you too. 🙏🏻

Alzheimer's tends to deteriorate in big jumps so they deteriorate quickly and then stay at that level for a few months. This means that the change can be very dramatic, instead of the gradual you get with many illnesses.

You know she is safe and being well looked after.

Having a blocked bowel when you are elderly is often fatal - she has done very well to survive at all.

However elderly people, with or without dementia, just don't bounce back in the way younger people do.

A 3 month admission would take months and months to come back from, if not years (it took my elderly DM best part of 2 years to recover from sepsis and she isn't as good as she was and wasn't dealing with dementia at the same time)

An episode of very serious illness like this is a massive trauma to the brain so it is not sadly a surprise that she is worse than she was. It also sounds like she was a lot worse than 'mild memory loss' at the start given the severe hallucinations.

You and your mum have done amazingly well, but none of us can win against age and dementia. Please try to stop feeling guilty as you have done so much to support her.

I'm so sorry 💐

Have you seen your GP? It's such a traumatic experience to watch someone decline like that. Have you also lost your dad?

It sounds as if your dad was perhaps holding the fort, maybe more than even he realised, for a long time. It's not unusual. Also my mother in law's dementia only went off a cliff to the point of needing care after her son my DH died. In a way I was almost grateful - it was like her dementia got worse as sn alternative to grief in a way.

This.
You are clearly a very good and caring daughter.
You are grieving your beloved DM. Things have changed so quickly and you’ve been so stretched in all directions that you haven’t had ‘me’ time to properly process.

Is there a nice private spot in the care home where you and your mum can cosy up together on a settee? I think my DM in her new world actually preferred to sit quietly and hug and hold hands rather than me talking 20 to the dozen. It might make you feel closer to her. Then when you get up to leave you it might not upset you as much.