Rapid Deterioration

[helenarose]

I have a grandmother who i am very close to who has been diagnosed with vascular dementia and alzheimers. Her rapid deterioration which has progressed over a very short space of time since February 2016 has seen her from living an independent life at home, to a specialist mental health unit, to a care home (where she fell out of bed during the night to go to the loo and broke her hip) and is now in hospital, where she is even more confused and disorientated.

It began by being confused with the time and frightened and disorientated at night, hallucinating and being terrified of being upstairs. She then began to be incapable of doing basic tasks such as cooking for herself, baking, crochet or make a cup of tea, she could dress herself but got confused with what was clean and dirty.

She became so anxious and disorientated she was unsafe in her own home and was admitted to specialist mental unit very local to us, where her needs a pre existing medication were assessed. At this point i should note my Nan has suffered with anxiety issues for the past 30+ years and had been on the same medication pretty much all of this time as it was working for her but by todays standards in medicine was out of date. Given the nature of the medication she had to be slow weaned off it and her anxiety began to exacerbate but she seemed settled and cohesive. She was discharged from the unit at Easter.

We managed to get her a place at a lovely home local to us, which has a good reputation and lovely staff. My nan's anxiety continued to be a significant issue and she began to get a bit more confused and muddled which with the dementia and AD made issues more complicated. She also began to lose a lot of weight and on occasions would get really clingy about us leaving. At the same time she said how she didnt want her friends to see her as she couldnt have a proper conversation and was talking rubbish - she was more than aware that she was unwell and had to told me several times she wanted to die. Over the last 3-4 weeks she has lost a significant amount of weight and become very frail.

Last Monday in the middle of the night she fell in her bedroom and subsequently broke her hip. She has had a partial replacement and is on an orthopaedic ward in hospital with a specialist bay for dementia patients. I visited her today and was told by family to prepare for the worst. As she has a preexisting issues and is on strong pain medication i knew she wouldnt be in a good place. She was constantly babbling and i did manage to calm her down at points, however whilst the Drs and Nurses are pleased with her mobility (she is very capable when she wants to be on her feet) they are concerned that she isnt taking in enough fluids or food and now has a UTI. She had been on a drip which she had pulled out of her hand but they were going to try and put another one in. During my visit i did manage to get her to drink some water. I am just struggling to see her recovering, she seems to have lost any motivation to carry on and is so confused.

There are small nuggets of conversation and interaction that i have with my nan and i witness her having with other people when i know that the real her is still there.

We are fortunate as a family that we are strong and supportive, most of the time i have work and other commitments to distract me from what it going on and i know that my nan is getting the best care possible and is safe but i still worry about her every night before i go to sleep, trying to hold back the tears.

I am still struggling to cope with the rapid pace that the illness has engulfed her and see her suffering further. Does anyone else have experience of this all happening so quickly? I imagine its more common than i think.

Sorry for the length of the post - i just needed to type away and get it off my chest.

Thanks,

H x

 

[theunknown]

Helena, I can't give you any answers or reassurance, but just wanted to say that my mum went from being the person I'd always known to being someone I just didn't recognise, or see as my mum. Although to me this seemed to happen really quickly, looking back I think there'd been problems for a long time. So, yes, I think it can appear suddenly, but we don't always know what was going on in the background.

 

[helenarose]

Helena, I can't give you any answers or reassurance, but just wanted to say that my mum went from being the person I'd always known to being someone I just didn't recognise, or see as my mum. Although to me this seemed to happen really quickly, looking back I think there'd been problems for a long time. So, yes, I think it can appear suddenly, but we don't always know what was going on in the background.

Thanks theunknown.

Mum went to visit her today, she has now been in the hospital for a week and detriorated during that time significantly. She is constantly babbling and not sleeping at all and not eating/drinking enough She appears to be recuperating from surgery okay albeit not eating/drinking enough so not helping with uti but they are pleased with her mobility when she is willing. We are currently awaiting an assessment with people from her current care home - mum is concerned that given her rapid deterioration in her mental state they may not be able to cope with her returning there. Everything is so uncertain at the moment

 

[CeliaThePoet]

Unfortunately, a hip break can cause an incredible decline, such as you are seeing. I'm sorry. Strength to you and your family.

 

[Dothedealnow]

In my limited experience, the UTI that my mother got in January 2016 was the start of a rapid decline from informally diagnosed mild dementia to formally diagnosed early severe. I can only imagine what a hip injury would do in conjunction with a UTI. Best wishes and she is in the right place to make her as comfortable as possible.

 

[Missy]

I have an aunt who when admitted to the care home In November was "just" in the dementia unit rather than elderly frail. Several falls and utis later and she has been moved to the nursing part of the home as she has declined so much. Its very sad.

 

[Linbrusco]

My Mum up until Christmas gone, was at a mild stage of Alzheimers dementia.
Since developing urinary incontinence and 2 UTI's, Mum is now at a moderate tending next stage of dementia.
Basically on a scale of 1-10, with 10 being severe, Mum has gone from a 4/5 to a 7 in about 5 mths.
I believe one more type of infection and Mum will have to go into care.
Dad cannot cope with the sudden changes, and in fact both times she has had a urinary infection it was me that picked up on the symptoms.
I know Dad has cognitive impairment, but it beggars belief how he can't see how letting mum walk to the shops, with a flushed face, glassy eyes and increased confusion and wobbly on her feet is OK and that there is nothing wrong with her?!

 

[Jacquetta]

Hi helenarose

It's strange but my dad who's 89 and fine still drives plays golf and snooker. .sometimes blanks our my mother's condition .. but still wants me to deal with all the things that go wrong. . He worried my mother for years when she was well to the point when she used to ring me and tell me he was giving her a breakdown. . That was years ago when they were both in their prime. .Now I know what she was on about !!I think perhaps they try to get things back to the way they used to be.. and perhaps transferring all the stuff onto others ..it's hard....this probably isn't much help but Im with you ☺

 

[cheesypete]

Helena
You are right, the rapid decline of some does seem to be quite common.

My mum had a "large" UTI last August which left her hospitalised for 3 weeks, and us not knowing whether she would return home. She did return, and has remained relatively ok up until the last few weeks.

Now in the position where she is incredibly paranoid, accusing me of all and sundry, getting very agitated and some days quite aggressive / abusive towards myself and care team (so much so, that they now go in twos). She doesn't appear to want to know me most of the time (seemingly linked to her paranoia) but the next day crying that i never see her / talk to her anymore. It goes on.

But this is about you - please be assured that you are not alone in this, you can do no more than you are doing and the massive "team" on this forum are all here for you x

 

[helenarose]

Thanks

Thanks all for the support.
Mum has been to see her today and seen Dr, they are pleased with progress and she will hopefully be discharged tomorrow. Someone has been to visit in hospital from her care home and they are happy that they will be able to sufficiently accommodate her, a relief to my mum who thought she might have to go into respite/nursing care. Nan has also stopped constantly talking/muttering, which makes me think the UTI may have been causing issues, along with her anxiety and dementia/ad plus being in an alien environment. So seeing her more content is s comfort, but we just don't know what's around the corner.

 

[Clemmy]

Hope you Nan is ok

Hi Helena

I hope your Nan is OK now she is hopefully back in her care home. Both my aunt's have/had both Alzheimer's AND Vascular. I really felt for you when I read your post as one of my aunt's broke a hip, went in to hopsital, had the hip op, wasn't eating/drinking, got pneumonia, and eventually died following the Liverpool Protocol - my aunt had severe dementia. You don't say what stage your aunt is at. The vascular dementia tends to mean there is a plateau in the disease's progress where there is not too much perspectable difference, and then decline can be very severe/rapid. The UTI's really cause problems agitation/aggression/being unwell - they can be really tricky to get rid of and their serial nature causes deterioration. My aunt's carer is particularly adept at picking up when my aunt has a UTI and getting it diagnosed early. The medical profession seem to try to treat these with a constant bombardment with antibiotics and I'd love to know if there is an alternative treatment e.g. herbs but that could be tricky given the number of drugs someone with dementia can be taking (along with any other meds an elderly person can need!)

I have seen both my aunt's in a hospital setting with 2 types of dementia and the ordinary hospital environment is a really confusing, upsetting place for someone with dementia. One of my aunt's returned home with 24/7 live in care following her stay in hospital as she really couldn't be on her own any longer (previously she had support visits several times a day and someone who helped her regularly with shopping and the family doing everything else).

You have definitely come to the right place to get some perspective and support as someone on this forum will have been where you are with their relative/partner/husband/wife at some point. Talking Point is a wonderful place, the collective knowledge is huge.

I really hope your Nan settles back in ok.

Thinking of you.

Thanks all for the support.
Mum has been to see her today and seen Dr, they are pleased with progress and she will hopefully be discharged tomorrow. Someone has been to visit in hospital from her care home and they are happy that they will be able to sufficiently accommodate her, a relief to my mum who thought she might have to go into respite/nursing care. Nan has also stopped constantly talking/muttering, which makes me think the UTI may have been causing issues, along with her anxiety and dementia/ad plus being in an alien environment. So seeing her more content is s comfort, but we just don't know what's around the corner.

 

[helenarose]

Turn for the worst

Unfortunately things have taken a turn for the worst. When i last saw my nan at the weekend she was struggling to register that she had food in her mouth and could be fed, which was a real worry for the CH. I managed to get her do drink some of the thickened meal replacement drinks. Her anxiety made this more difficult but we eventually were able to get her a bit more settled.

Its been very difficult seeing her deteriorate so quickly, she would just mutter nonsense then start calling your name. The most heartbreaking moment was shortly before I left and said "i love you", she kissed me on the cheek and said "i love you too"....
What i also found bizzare was that although she physically looked frail and has lost a lot of weight, her physical strength (gripping my hand etc) was really still there.

Mum got called to CH this morning and they are waiting for the Dr to come out as she hasn't taken in any fluids and is just sleeping. I assume we are now on the end of life care journey now, we just dont know how long for. It is at least a comfort that she is settled, calm and at peace.

 

[peterrabbit]

Unfortunately things have taken a turn for the worst. When i last saw my nan at the weekend she was struggling to register that she had food in her mouth and could be fed, which was a real worry for the CH. I managed to get her do drink some of the thickened meal replacement drinks. Her anxiety made this more difficult but we eventually were able to get her a bit more settled.

Its been very difficult seeing her deteriorate so quickly, she would just mutter nonsense then start calling your name. The most heartbreaking moment was shortly before I left and said "i love you", she kissed me on the cheek and said "i love you too"....
What i also found bizzare was that although she physically looked frail and has lost a lot of weight, her physical strength (gripping my hand etc) was really still there.

Mum got called to CH this morning and they are waiting for the Dr to come out as she hasn't taken in any fluids and is just sleeping. I assume we are now on the end of life care journey now, we just dont know how long for. It is at least a comfort that she is settled, calm and at peace.

I am sorry, I hope she can take fluids soon and keep comfortable.

 

[helenarose]

I am sorry, I hope she can take fluids soon and keep comfortable.

We are now on glycerin swab sticks for her unfortunately she can't handle any fluids because any reflex in her mouth has gone and could choke.
She isn't conscious but is peaceful calm and sleeping. CH are taking good care of her and she has had family with her all day, we just don't know when she will go at this point...

It is at least a comfort to see her calm and at peace after seeing the torment of this illness upon her in such a short space of time.