Fast decline

[Locket Love]

Does anyone else have experience of rapid decline?

My Mum is 70. Was diagnosed with Alzheimer's at the end of last year. She's been forgetful for a few years, maybe 5. We had to put her into a care home as Dad was ill and couldn't look after her as he had a few hospital stays and she couldn't be left on her own. This was back in August that she went into the home. She understood Dad wasn't well and she couldn't be left alone. She didn't like it at the home. She was very confused and not making sense when we visited. Then in October she became agressive and violent. Ended up getting sectioned as they were struggling to deal with her. Then after a 10 week stay in a dementia psychiatric hospital she got moved into a general hospital with aspiration pneumonia. She had stopped walking a few weeks before and was struggling to sit up. We are now at end of life care. The speed of it has been unbelievable. My Mum has changed so much.

She was diagnosed with Alzheimer's but the words frontotemporal dementia have been mentioned. I just can't get my head around this huge decline. She had issues back in August but this is unbelievable. She is being moved back to the care home soon for palliative care. The same place she ran out the door into the ambulance but now she's bed bound and unable to walk. This disease is so cruel.

Just looking for some answers really and reasurance if others have had a similar situation. Thank you.

 

[Kikki21]

Everyone has different experiences with dementia although decline can be as rapid as in the case with your mum but people can & do bounce back at times. It does seem that going into a hospital environment is not good for dementia patients & whereas we might see it as a place for recovery for people without dementia, it doesn’t seem that way for people with it sadly.
My mum declined rapidly in the space of 3 weeks. She had severe dementia, was in a care home but was eating, drinking, walking with a frame & joining in activities to being suddenly admitted to hospital being sick to not eating much, becoming bed bound & getting aspiration pneumonia.
It’s very hard to know until you need to administer end of life meds just what is what. Have you asked about her prognosis? I know that must be a difficult question to ask. X

 

[Locket Love]

Thank you for your reply. They have said she's on the end of life care plan now. She's having morphine injections. They are giving her sips of water and pureed food if she'll take anything but she hasn't eaten properly for ages and her swallowing isn't great. They have said they aren't sure how long she'll go on like this for. It's heartbreaking to see.

 

[RJCB]

Hi Locket Love,

I can relate to the rapid decline. My Dad was living quite independently until last month, following multiple falls, hospital admissions and has now moved to a Care Home and is in a massive decline.
I am an RN, thought I’d seen it all, and yet I feel shocked and have a feeling like grief as he has changed so much. I am so sorry for you and your Mum. I wish you peace at this painful time x

 

[CWR]

Thank you for your reply. They have said she's on the end of life care plan now. She's having morphine injections. They are giving her sips of water and pureed food if she'll take anything but she hasn't eaten properly for ages and her swallowing isn't great. They have said they aren't sure how long she'll go on like this for. It's heartbreaking to see.

My heart goes out to you. My mother had been active, despite her dementia, up to a month or so before her passing. She caught a cold, fell out of bed and was taken to hospital. She came home, only to fall out again, and developed cellulitis, and when she came home she was not mobile and could hardly eat or drink, so I had to have her taken to hospital again, and decided that I could no longer look after her. I kept hoping she would bounce back, but, sadly, she didn't, and passed away soon after. You just dont know with this illness. Hope for the best, but prepare for the worst.

 

[Locket Love]

Thank you for your replies. Mum got moved back to her care home yesterday. She's now nearer my Dad and sister. I'm 150 miles away - more guilt. My sister visited in the afternoon. She was awake and trying to talk and sit up but she was struggling. We are now thinking is she aware of what's going on or does she feel trapped in her own body? It's really the saddest thing to see. And no one can tell you how long she'll go on for.

The GP is coming out soon as not sure what the plan is with feeding. Once swallowing issues are present what are the options? I think the hospital tried a couple of spoons of puréed food and sips of water. How long can someone go on like this? She's so frail.

 

[Pete1]

How long can someone go on like this? She's so frail.

Hi @Locket Love, I'm sorry to hear about your Mum's condition, I speak from experience when I say that it is a very painful situation to witness. I note that your Mum is on morphine, so she should be comfortable. It is difficult to determine how long it will continue for and the GP''s are rightly reticent to put a timescale on it. The care home will be experienced in this situation and will know the signs of deterioration. Stay strong, such a difficult time. All the best.

 

[RJCB]

Thank you for your replies. Mum got moved back to her care home yesterday. She's now nearer my Dad and sister. I'm 150 miles away - more guilt. My sister visited in the afternoon. She was awake and trying to talk and sit up but she was struggling. We are now thinking is she aware of what's going on or does she feel trapped in her own body? It's really the saddest thing to see. And no one can tell you how long she'll go on for.

The GP is coming out soon as not sure what the plan is with feeding. Once swallowing issues are present what are the options? I think the hospital tried a couple of spoons of puréed food and sips of water. How long can someone go on like this? She's so frail.

Hi Locket Love, just wanted to say that I am thinking of you and your Mum x

 

[Locket Love]

Thank you for your support. My Mum passed away this afternoon. She is now free from the torment of this hideous condition. I think it's going to take a while to process. xx

 

[Cat27]

I’m so sorry @Locket Love. My thoughts are with you.

 

[Shedrech]

Sad news @Locket Love
My condolences to you and your family

It will take time... be kind to yourself

 

[Bunpoots]

I’m sorry for your loss @Locket Love . It will take time.

 

[Locket Love]

Thank you. I'm so glad I found this forum if only for a short time. I'm definitely going to try and share my knowledge with others. It's a really strange illness and affects people so differently. Much love.

 

[RJCB]

I am so sorry, Locket Love. Thinking of you x

 

[summertime20]

I’m so sorry for your loss