Is mum going a care home, nursing home or coming home

[Evie5831]

Hi, another thread looking for other people’s experiences.
My mum has been in hospital for over a month after fracturing her hip falling of the edge of her bed. Before she went in we were asking professionals for help with her, at that time, undiagnosed , Alzheimer’s which they refused to give . Once she was admitted it very quickly became clear to them that she had these needs and over a period of a week she had a diagnosis of Mid Level Alzheimer’s.
Over the past month plus she has been in four wards and been moved to an isolation unit when she tested positive for asymptomatic COVID. Each ward and indeed person we speak to has a different interpretation of my mum’s needs. On Tuesday morning mum was due to transfer to a nursing home, only to be stopped by the positive test. Now the isolation unit is saying she is fine, no sign of confusion, no more apparent physical reasons to need nursing home care.I thought we had two weeks to get our heads round this change of heart but today I have been told she can be discharged next week So care needs to be organised.
Immediate dilemma , do we hold firm on the nursing home they said up until Tuesday that mum needed for physical needs as well as Alzheimer’s , do we hastily arrange a care home for her to go to or take the risk that half of the professional were wrong or right conversely and bring her home.
What happens if we put her in a care home that she doesn’t need or conversely bring her home only to find that she cant cope and we have to start the battle over again.
Up until Tuesday we were told she needs two people to get her in and out of bed and walk with her, that she won’t eat and spends the majority of her time asleep. As far as wishful thinking goes it would be wonderful to believe she has improved to such a degree but my head keeps questioning it all.
We have NO access to doctors as the staff are “too busy to talk to us” so I only have the voice of my mum from several years ago, way before dementia set in telling me the pains of hell I would suffer if I ever put her in to a home?

 

[thistlejak]

One thing to keep in mind , the home that you choose will assess your Mum themselves to see if they can meet her needs . If they decide that they cannot they will not accept her. You could try the hospital social worker to see if they can help.

 

[Sarasa]

How very confusing @Evie5831. I'm sure other with more experience of discharging a loved one from hospital will be along soon, but I would be inclined to go ahead with the transfer to the nursing home. I'm sure if it turns out your mother would be able to cope at home, maybe with regular carers still coming in, she still needs time to recuperate from covid and to improve her fitness after her hip fracture. You can then decide if she is in the right place. Sending her straight home sounds like a recipe for her ending up back in hospital again.

 

[Lemondrizzle]

Hi @Evie5831. I had this same problem when my Auntie was in hospital. No sooner had I been told by the OT that she was worried abou my aunt being at home alone overnight, than she was sent home. Needless to say this was the cause of one of the failed discharges. There was a point where I only got to speak to a doctor when I told the person who answered the phone that if the doctor couldn't make time to speak to me I would be taking a complaint higher up the hospital. All of a sudden a doctor was on the phone!

 

[Penelope Pitstop]

I would dig you heels in about the Nursing/Care Home if that's what you think is right. I kept a diary of symptoms and names of Doctors, Social Workers etc and what they said. So I could quote back.

You could insist she doesn't go home at first at least. Once in a home for a few weeks she may not want to leave and they may agree she needs to be there. There's a lot of what it's. If she has assets and can be self-funding and agrees to go in a home thats hers and your decision. Thats what happened with me and the Social Worker just said crack on and find a home and ring if you need help. I don't know your circumstances. But I will be honest it absolutely broke me having my mother at home. She could not be left alone she just wasn't safe. That's what you have to make sure they understand. If she's in danger left alone there's a duty of care to protect.

It may have been mentioned but Social Worker and Occupational Therapists were the ones that helped us. But this was after she was sent home. Due to costs they will always try back at home first unless its obviously dangerous. So you need to insist that its dangerous to send her home. They also look at family. If they know, like me you are on hand 24/7 they are going to push for the going home option.

 

[Evie5831]

Thank you all for your comments and support. My sister spoke to the hospital again today and they have little more information for us. She will be seen at some point this week by a doctor who will assess her needs. The previous assessment done at the hospital re discharge will be disregarded and the new doctor will make the decision as to what should happen next to her And when and where she will be discharged to.
no further forward and just as confused . Social workers will apparently talk to us after the doctor has assessed her needs and then a “suitable” placement will be sought but they cant yet tell us what or where that will be!
I wonder if this situation is only this bad due to COVID and the lack of access to my mum. I feel if I could see her I would be in a better position to assess her improvement/decline and would have an idea of where her future should lie.
I wish I could be more supportive of the NHS staff but my experience throughout this whole time has been negative, with a few good people in the mix. On the whole they have been obstructive, unsupportive and in some cases damn right rude. I can only hope that their treatment of my mum has far exceeded their approach to my family. I have complained to PALs who told me I was thinking only of my mother and not the fact that everyone is on their knees. I really appreciate the pressures of their jobs but the human side is gone in the medical care in my area now.
Rant over and a genuine thank you to the people on here that offer me support in my dark hours

 

[Penelope Pitstop]

I found the hospital quite unhelpful about what happens after. Without boring you with my whole story. My mother was seriously ill and this either caused or rapidly accelerated the dementia. So she developed dementia within a few weeks. I was just told its delerium she will recover, she never did. They packed her off home. This is a few years ago. I had to demand information as I couldn't trust what my mother said. A very nice doctor said to me I want your mother home before she catches something in here ? not reassuring.

I suspect Covid has little to do with it. It sounds similar to my experience.

Hopefully they will help you now ?

 

[Evie5831]

I found the hospital quite unhelpful about what happens after. Without boring you with my whole story. My mother was seriously ill and this either caused or rapidly accelerated the dementia. So she developed dementia within a few weeks. I was just told its delerium she will recover, she never did. They packed her off home. This is a few years ago. I had to demand information as I couldn't trust what my mother said. A very nice doctor said to me I want your mother home before she catches something in here ? not reassuring.

I suspect Covid has little to do with it. It sounds similar to my experience.

Hopefully they will help you now ?

Thank you, not that I would wish it on anyone but it helps to know I am not alone in this mess.
No further forward atm but no further back so I am trying to be positive. The incessant waiting with no answers is doing my head in!

 

[Penelope Pitstop]

I know its ? . Hope you get the right outcome.

 

[vale]

My mother has mixed dementia and was in her own home, she suddenly became delirious and off balance so I took her to my home to look after her. She then fell twice, once down the stairs. She became worse and the doctor treated her for a uti but she did not improve. After numerous conversations with 111 they advised me to call an ambulance. The paramedics were brilliant but detected a heart defect and recommended that she went to hospital. The first ward she was in maintained contact with us but then she tested positive for Covid and was transferred to a Covid ward. I appreciate how busy the nhs are but we were unable to get updates and given incorrect information on a number of occasions. We felt helpless as there were no visitors allowed and we feared mum would be left lying there deteriorating. Eventually they discharged her to me with 6 weeks of an enablement team visiting every day. That was three weeks ago. I had to install a stair gate as she could hardly walk and was very disoriented and didn’t appear to know anyone. It was a very difficult time for my husband and I, we felt tied to the home and had to walk the dog separately. Gradually she has improved and can now get around on her own but it is increasingly difficult dealing with the ladvancing Alzheimer’s and vascular dementia. I always promised mum we wouldn’t put her in a care home but now feel one day it will be inevitable, as she worsens there will be too much pressure on the family, mainly me. I feel that I have done the best I can in the circumstances and that is all you can do.

 

[Maxi25]

Dear @Evie5831. My heart goes out to you. Likewise with what @Penelope Pitstop has written, I agree that sometimes hospital staff, social workers and Care Home workers can be quite Unhelpful and you end up feeling extremely confused. Ditto again with @Penelope Pitstop - I won't bore you with my story of my Mum but I can truly relate to your dilemma. It's made even worse with not being able to talk or see your Mum, as under normal circumstances no doubt, you would be able to judge the depth of her dementia and be able to clarify what or where your Mum would best be suited to be moved to.

Just a suggestion - but could you perhaps skype or facetime your Mum a few times which could give you a bit better indication of her condition and mental state.

The whole process of assessments, doctors reports and lack of good information is extremely stressful and very confusing. However, you will probably find that the decision is probably made for you if a Doctor is able to assess your Mum. I would think the doctor will contact yourselves (next of kin) and hopefully advise what would be the best way forward for your Mum's state of health and wellbeing. I would also think that a care package would need to be put in place especially if she's not very mobile and not able to make decisions for herself.

There is a lot of support in this forum and I have found it a great help with my anxiety, stress and trauma. Keep posting @Evie5831. Thinking of you. @Maxi25

 

[Evie5831]

Dear @Evie5831. My heart goes out to you. Likewise with what @Penelope Pitstop has written, I agree that sometimes hospital staff, social workers and Care Home workers can be quite Unhelpful and you end up feeling extremely confused. Ditto again with @Penelope Pitstop - I won't bore you with my story of my Mum but I can truly relate to your dilemma. It's made even worse with not being able to talk or see your Mum, as under normal circumstances no doubt, you would be able to judge the depth of her dementia and be able to clarify what or where your Mum would best be suited to be moved to.

Just a suggestion - but could you perhaps skype or facetime your Mum a few times which could give you a bit better indication of her condition and mental state.

The whole process of assessments, doctors reports and lack of good information is extremely stressful and very confusing. However, you will probably find that the decision is probably made for you if a Doctor is able to assess your Mum. I would think the doctor will contact yourselves (next of kin) and hopefully advise what would be the best way forward for your Mum's state of health and wellbeing. I would also think that a care package would need to be put in place especially if she's not very mobile and not able to make decisions for herself.

There is a lot of support in this forum and I have found it a great help with my anxiety, stress and trauma. Keep posting @Evie5831. Thinking of you. @Maxi25

Thank you for your response which I have only just seen. We are waiting on a call today to tell us what the next step will be for my mum as she finishes isolation today . I haven’t been able to Face Time or Skype her as she doesn’t have her lap top in the unit, her phone is AWOL. The staff have let my sister speak to her over the phone once in the last couple of Weeks but normally have no time to help facilitate that

 

[Evie5831]

Thank you for your response which I have only just seen. We are waiting on a call today to tell us what the next step will be for my mum as she finishes isolation today . I haven’t been able to Face Time or Skype her as she doesn’t have her lap top in the unit, her phone is AWOL. The staff have let my sister speak to her over the phone once in the last couple of Weeks but normally have no time to help facilitate that

 

[Evie5831]

Dear @Evie5831. My heart goes out to you. Likewise with what @Penelope Pitstop has written, I agree that sometimes hospital staff, social workers and Care Home workers can be quite Unhelpful and you end up feeling extremely confused. Ditto again with @Penelope Pitstop - I won't bore you with my story of my Mum but I can truly relate to your dilemma. It's made even worse with not being able to talk or see your Mum, as under normal circumstances no doubt, you would be able to judge the depth of her dementia and be able to clarify what or where your Mum would best be suited to be moved to.

Just a suggestion - but could you perhaps skype or facetime your Mum a few times which could give you a bit better indication of her condition and mental state.

The whole process of assessments, doctors reports and lack of good information is extremely stressful and very confusing. However, you will probably find that the decision is probably made for you if a Doctor is able to assess your Mum. I would think the doctor will contact yourselves (next of kin) and hopefully advise what would be the best way forward for your Mum's state of health and wellbeing. I would also think that a care package would need to be put in place especially if she's not very mobile and not able to make decisions for herself.

There is a lot of support in this forum and I have found it a great help with my anxiety, stress and trauma. Keep posting @Evie5831. Thinking of you. @Maxi25

So sorry you are in the same position

 

[Evie5831]

As no nursing home placements are available in my area Mum has gone to a care home today to start her four week assessment Which is nerve wracking in itself.
With COVID restrictions showing no signs of abating I am wondering about 24/7 home care should full time care be the recommendation.
Does anyone on here have any experience of 24/7 care and in your opinion is it a good option.
My mumhas said for thirty years plus that she would never go into a care home and has not changed her opinion now. In fact she very vocally reminded me of this this morning when I was allowed to wave her into the home ( soul destroying) not to be able comfort her up close. That’s one of the reasons I am even thinking about home care, to get her the care she needs whilst giving her her wish to stay in her own home

 

[Sarasa]

Hi @Evie5831, I have no experience of this but I did a search using the bar at the top. Some of these threads are a bit out of date but hopefully they'll give you a bit of an idea of the pros and cons of care at home. (9) Search results for query: care at home | Dementia Talking Point (alzheimers.org.uk)
As I've said I've no experience but I think it would depend on how the person with dementia presents and whether there would be room for someone else to live in their house. It would never have worked with my mother, who is extremely feisty and was fiercely independent and also lived in a small flat. She'd have shown a carer the door in about two seconds flat, and even if she had agreed to it would have wanted to go out by herself all the time. Until recently I thought it might be a possible option for my mother in law. She is much more biddable than my mother, loved her home and has very limited mobility. At the moment she has carers in three times a day, and there have been times when she has been distraught as she thinks she is being held prisoner in a strange place. I now think she would actually be happier in a care home, even though that is something she had always said she didn't want.
I know it is horrible leaving someone at a care home, made so much worse by the covid restrictions, but your mum is in the place she needs to be at the moment. Just remember to look after yourself as well as worrying about her.

 

[Evie5831]

Hi @Evie5831, I have no experience of this but I did a search using the bar at the top. Some of these threads are a bit out of date but hopefully they'll give you a bit of an idea of the pros and cons of care at home. (9) Search results for query: care at home | Dementia Talking Point (alzheimers.org.uk)
As I've said I've no experience but I think it would depend on how the person with dementia presents and whether there would be room for someone else to live in their house. It would never have worked with my mother, who is extremely feisty and was fiercely independent and also lived in a small flat. She'd have shown a carer the door in about two seconds flat, and even if she had agreed to it would have wanted to go out by herself all the time. Until recently I thought it might be a possible option for my mother in law. She is much more biddable than my mother, loved her home and has very limited mobility. At the moment she has carers in three times a day, and there have been times when she has been distraught as she thinks she is being held prisoner in a strange place. I now think she would actually be happier in a care home, even though that is something she had always said she didn't want.
I know it is horrible leaving someone at a care home, made so much worse by the covid restrictions, but your mum is in the place she needs to be at the moment. Just remember to look after yourself as well as worrying about her.

Thank you for the website I will have a look at it And thank you for your kind words

 

[imthedaughter]

I think it's a little early to make the decision although I too would be looking at the options - the care home will assess your mum and let you know what level she is at in terms of how much care she needs and whether that care could practically be provided at home.
I thought it was a little early for dad to go into a home but there wasn't a lot of other options and now he's been there almost two years, looking back, it was definitely the right decision and at quite a good time as he was happy to go in and maintained some independence for a while before he stopped seeking that so much.
Dad would have prefered to be shot than have dementia but that's what happened and there's a point at which wants become less important than needs and he ran out of road in terms of alternatives.
In fact when he was assessed last year he was given the highest tier of funding by the council as he was recognised to have high needs.
Hopefully mum gets what she needs and is well cared for over this four weeks!

 

[Evie5831]

I think it's a little early to make the decision although I too would be looking at the options - the care home will assess your mum and let you know what level she is at in terms of how much care she needs and whether that care could practically be provided at home.
I thought it was a little early for dad to go into a home but there wasn't a lot of other options and now he's been there almost two years, looking back, it was definitely the right decision and at quite a good time as he was happy to go in and maintained some independence for a while before he stopped seeking that so much.
Dad would have prefered to be shot than have dementia but that's what happened and there's a point at which wants become less important than needs and he ran out of road in terms of alternatives.
In fact when he was assessed last year he was given the highest tier of funding by the council as he was recognised to have high needs.
Hopefully mum gets what she needs and is well cared for over this four weeks!

Thanks for you comments. I always have been a run before you can walk kind of girl and need answers yeaterday. Not a good trait when you have to deal with health and social services?

 

[Frank24]

Hi Evie5831, I have been in a similar situation pre COVID times with my Mum. Hospital staff were breaking the law, my POA was disregarded. There were safeguarding issues with the other members of my family in regards to my Mum which were ignored as they lived local.... I wont go on but i can empathise entirely with what a stressful situation this can be and this was pre covid so no doubt its worse for you. I fought tooth and nail the decision to place my mum into temp care in a "available space". I had live in homecare for my mum for just under 2 years. She went into a care home in July last year and I haven't seen her since. From my perspective, and I was warned at the time, homecare is a minefield. Some things worked well, and some things didn't. I had a drunk carer report for duty in the first instance. Someone who was meant to stay long term who decided after 3 days she couldn't stay, someone who stayed for a long time - but I think it only can really work as it should if you and your family have time to fully support the arrangement. It is very hard. Not trying to put you off, but its not a clear cut process as you are sold by homecare agencies. I found that they didnt deliver on the brochure even though the last long stayer with my Mum worked very hard and the circumstances worked well.
If you would like to ask any questions about the homecare element please feel free to do so.
Im now relived my Mum is in an environment that is regulated. Yes she did go down hill once in a care setting, and I haven't been able to see her since last year so that is also something you have to bear in mind.
Really hard... 1 thing I found really invaluable through the discharge process was to engage a mental health advocate on my mums behalf so I could be sure the hospital were acting lawfully throughout the discharge process. They explain everything to you in simple terms but the legality of what needs to happen, and their presence at the meeting made a lot of difference. The NHS staff wanted to steam roller me totally and then found that wasn't possible.
All of this so hard.