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Husband and care

15 replies

2024name · 01/02/2024 10:31

I am not sure where to post this because it is not directly related to health, but rather to care.

My husband has been in a care home since July. He is in his early sixties and spent a considerable time in psychiatric hospitals after experiencing depression, delusions and hallucinations. He also had an experience where his 'legs gave way' just prior to the mental health crisis.

In hospital, he seemed to become weaker. He began shuffling about three years ago, but this became much more profound over the last year, and he has developed a stoop and now needs a frame to help him walk.

He went to the care home in July. It is a home that specialises in supporting people with MH issues. However, his 'condition' has seemed to get worse over the past six months. He has problems with his bowels, he is apathetic, he struggles to get out of bed (physically) and he does nothing, even when offered activities.

He went into hospital after being unable to get out of bed and soiling himself (sorry for being a bit graphic). He was in hospital for two weeks, and it was there that he was given the frame to walk with.

He left hospital on Friday and a support worker from the home (which is just opposite the hospital) supported him to walk back to the home. However, my husband fell and now has a large bruise on his face.

My problem is that there seem to be two distinct assumptions about the cause of my husband's problems, and I feel this is affecting the care he receives.

The first assumption is that my husband is very depressed, and very anxious and is afraid of moving because he does not want to experience his legs giving away as they did before. Therefore, he does not walk, and this has caused him to become unsteady on his feet. This is the assumption that the care home have and it influenced the treatment (or lack of treatment) he received in hospital because the hospital communicated primarily with the home.

The second assumption is expressed by two doctors (both psychiatrists) and it is that my husband has some type of neurological condition, that has caused his difficulties with movement and also contributed to his mental health problems. He has been referred for a specialist appointment which should take place in two or three weeks time.

My husband has an upstairs room at the home. There is only one banister, the other side is a stair lift that is never used. Since his fall on Friday, he has become very frightened of attempting to descend the stairs. Also he cannot carry anything like a cup of tea up the stairs due to his balance problems and weakness in his wrist.

He remains in his bed most of the time. Staff do check on him and they ask him to take a shower. My husband cannot access the shower, nor can he get into a bath unaided. Staff seem to think he could if only he tried.

I do not want to complain if it is the case that my husband really does need to be encouraged to move, and is capable of doing a lot more than he thinks he can do. However, I am sure he has genuine problems with mobility. He has a significant bruise on his face, the GP sent him to hospital because he could not get out of bed and he had soiled himself. He walks with a frame (even though he is placed in an upstairs room). Two years ago, he was a strong, robust man who walked for miles, drove every day and was meticulously clean. I am just concerned about the decline and the possibility that his needs are being inadvertently neglected.

OP posts:
Outliers · 02/02/2024 15:47

Sorry yo hear about the challenges you are dealing with OP.

I don't have direct experience to draw from - but giving a bump to hopefully catch someone else who might be able to help.

Mustardfan · 02/02/2024 22:21

Sorry to hear your story, that sounds awful to have seen your husband to decline like this at such a young age. It does sound like it could be something neurological. In terms of his mobility in the home, you could ask the local authority (is his care funded by the local authority?) to do an OT assessment. I used to work alongside OT’s (occupational therapists), who did exactly this - they would go into care homes and assess a persons moving and handling and mobility needs. It would help to have the care home on board and I’d suggest that you discuss this with the manager. If his care is funded by the local authority you could also ask them to do a care review due to the changes in his needs.

Nightmanagerfan · 02/02/2024 22:28

I think he might have Parkinson's. The symptoms fit, from the depression, shuffling, falling, apathy. It's very difficult to watch. If it is, then there are treatments that can help with the symptoms.

(Of course I am not a medical professional so this is just my view from what you've written here.)

Flowers
Nightmanagerfan · 02/02/2024 22:30

PS my relative with Parkinson's was so like your DH prior to the illness - even down to walking miles, being active and fit and thinking nothing of driving a few hundred miles to visit a friend for the day.

ThePure · 02/02/2024 22:39

I was coming on to say Parkinson's or a Parkinsons spectrum disorder like PSP
A DAT scan will decide definitively
Hopefully he will see a neurologist and they can make a proper diagnosis and then he can be managed properly

Lily124 · 02/02/2024 23:41

@2024name Sorry to hear you're both going through this, and he hasn't had the right investigations/support from health care professionals so far. It sounds a lot like symptoms of Parkinson's, however that's not always due to Parkinson's Disease itself, but can sometimes be side effect of anti-psychotic medications. Is he still taking any psychiatric meds? Can the psychiatrist review this whilst you're waiting for the specialist appointment?

lovinglaughingliving · 02/02/2024 23:52

Hello!
It sounds to me as though your husband could do with some assessments.
I have a lot of questions!
What triggered the initial mental health episode if he was fit and well two years ago?
Is there a social worker involved?
Who is paying for his care?
Is he CHC funded? If not it definitely sounds like he sound be!

He needs to see a physio and occupational therapist if he is to retain the use of his muscles and his mobility.
Does he have regular assess to therapy to help improve his mood? Antidepressants/antipsychotics?
What makes you think there is not something neurological going on? You say assumptions but I'm wondering what makes you think this isn't the case? When I read it (I am a nurse of over a decade!) I immediately thought PSP/MSA/Parkinsons!

Botani · 03/02/2024 00:02

How old is your husband?

BloodyLegalBeagles · 03/02/2024 00:06

Botani · 03/02/2024 00:02

How old is your husband?

OP states his age in her opening post

reflecting2023 · 03/02/2024 00:55

I think possibilities are

  • Parkinsonism symptoms - either primary or secondary to anti psychotic medication
Alphabet1spaghetti2 · 03/02/2024 01:19

I would have thought the care home should try to swap/move him to a ground floor room. Regardless of his eventual diagnosis he is going to understandably and naturally be afraid of falling again. He needs support, respect and appropriate aids/ a room to help him over come any fear and adjust to a possible ‘new normal’ for himself.
Are activities offered to him in his room to at least make him feel included and build his confidence, and generally make him feel a little better, social needs addressed? If he can’t be moved downstairs (admittedly not always possible) then can the stairlift be used. He needs to be assessed for his current mobility needs. I would be pushing for more from the care home in the way of support.

JamieJ93 · 03/02/2024 01:56

This definitely sounds like it's a neurological problem.
From your OP it really does seem your DH has gone downhill, really fast which makes me think that something medical is going on rather than just mental health issues.
What I cannot get my head around is the fact he has been left to suffer without investigations for so long.
I would expect his room to have been moved downstairs at the very least so staff could check on him and give him more 1+1 care, especially falling on his face, did he have a CT scan on his head after this fall, BTW?

2024name · 03/02/2024 07:26

Thank you for these really supportive and informative replies. One of the doctors who saw my husband last week, after his return to the home from hospital, told my husband that he will be seeing someone (either a movement specialist or neurologist) within the next two or three weeks.

Anti-psychotic medication was stopped over a month ago, because it was a possibility that this was causing/accentuating the symptoms, however, the 'shuffling' and and episode in which his 'legs gave way' began prior to his admission to hospital or receipt of any anti-psychotic medication. Furthermore, although this is speculation, I think the delusions and hallucinations he experienced, which caused the action that led to his hospital admission, may have been another symptom of PD or a similar condition. My husband has a history of mental illness, but nothing like that.

The home do offer activities e.g. craft activities downstairs or film night and so on. However my husband declines all these invitation. He also has a television in his room, which he never watches, an a laptop, a radio and books, all of which he never he never touches. When I visit him, I will put on a music video (he loves music) for us to listen to and talk about, but he never initiates any activity. He is very apathetic.

OP posts:
doitwithlove · 03/02/2024 08:04

Sounds like he is depressed, ask at the care home for dh to be added to the GP list when they next visit.

He obviously has underlined other issues that should be looked at within the next 2/3 weeks as you mentioned earlier.

Hope DH gets sorted.

ThePure · 03/02/2024 16:09

Lewy body dementia?
I am a bit surprised they did not manage to diagnose that whilst he was in the psych hospital but I would be willing to bet it is something along those lines
I am very sorry if that is the case but at least he would then get the best treatment and care that he can.
It would be unusual to discharge to a care home after an admission for depression as even very severe depression ought to be treatable enough to allow a person to function better than this. It does suggest something else is going on.

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