Visiting care homes this week - what to look for and ask

[grove]

Hello Loo , Hope you have a better Day to day than these last few Days ! & you are able to have a rest & feel a bit calmer in your self. Am you in "Limbo " as it were with Henry tho have you made your C Home choice ? ( Am i right in saying you have ? ) Sorry the S Worker wants him to move into a Temp place not good for you & Henry do hope that does not happen

Take Care & Best Wishes to you both

Love & prayers Love Grove x x x

 

[Loopiloo]

Dear Grove

Thank you for your post and kind words. I'm afraid I don't feel at all rested or calmer, and truly am at the end of my tether. Cannot cope with this any more.

Yesterday I tried to sort out the letter I am trying to write to the consultant of the hospital Henry is in, but simply could not do it which is not at all like me.

Then my daughter (150 miles away) phoned and we talked for a long time. She could hear I was "a mess" although afterwards I did feel a bit better, made myself a meal about 8pm, then decided to leave the letter until today when I felt better. But I do not feel at all better. I feel worse with the pressure of time having to look at more homes, visit Henry, deal with other matters, and so on. Don't feel capable of "dealing with things" any more and I am in a panic.

Yes I made two care home choices and on Tuesday the social worker said Henry was at the top of the list of my first choice. But then said he will have to leave the hospital over the next week or two and go into temporary care - an interim placement - until there is a vacancy in the first or second choice homes.

I now have another list of six care homes and only two of them have vacancies - so why give me the other four. I have visited one and it is totally unaceptable. I have a feeling the other will be likewise, and that because they are such awful homes that is why they do have vacancies.

Last night I read the Care Commission Report of the one I have not visited and it was not good. Last May they had an enforcement placed on them. This was lifted in September.

But I am repeating myself.

Thanks for your thoughts and best wishes.

Love
Loo xx

 

[Loopiloo]

The letter, and Mother's Day

I finally wrote the letter to the consultant. At first I was trying to write a formal business-type letter. But this is not a formal business matter. It is a deeply personal and emotional matter concerning the well being, care needs and best interests of my husband. In the end I wrote words as I would speak them, face-to-face. A few more than I would probably have the opportunity to say face-to-face.

I wonder if he will take the time to read it or just glance through it. Considering Henry has been in that hospital for 12 weeks now and I have never ever met the consultant, I think he should read it. But who knows.

Yesterday I phoned the hospital, spoke to a staff-nurse. The consultant is only in the hospital once or twice a week. Usually Wednesdays or Fridays. Depends if any meetings taking place. I know he does the patient rounds usually on Fridays.

I asked where to send the letter, the staff-nurse said leave it with one of them and yes, it would definitely be given to him.

I am not optimistic, having had more than my fair share of consultants over the years. Many are distant and arrogant and take the attitude that you should be seen and not heard. Occasionally there are too few who are actually human and talk with you as if you were human. I can but hope.

Since the ultimate decision concerning Henry's hospital discharge lies with the consultant, he is my last hope. Although I am not very hopeful. But I can do no more.

I do feel the better of writing the letter although it has taken a lot of my time, re-wording it, missing typing errors etc. I should have been visiting a care home or two today. Tomorrow I must visit Henry, having missed two days, and I must deliver the letter incase the consultant is there on Wednesday.

But if I make it a short visit to Henry then perhaps I can squeeze in a visit to a care home. A quickie. They are busy from about 4.30pm organizing meals. If I can find the care home. Directions are very poor.

It will have to be the remaining one which does have vacancies, but last year had an enclosure put in place..... now lifted. Then on Tuesday I shall visit another. After that I don't know. At least I will by then have seen three of the six homes on the latest list. A fourth is definitely too far away, and a fifth not much better. That leaves one..... but it does seem pointless travelling about to visit them if none have vacances re an "interim placement".

I have asked the consultant to re-consider this. But perhaps he is only interested in his own agenda, freeing up the hospital beds. He perhaps couldn't care less where patients go from there.

Ten minutes ago I took delivery of a huge and beautiful bouquet of Mother's Day flowers sent by my daughter Elaine and son-in-law. They lift the spirits. Also yesterday a card from each daughter and also one from my grand-daughter in Australia! Our younger daughter's card has such lovely words, especially meanful as she often doesn't bother. She has a troubled life, has been a troubled daughter all of her life, many problems, so it was especially meaningful.

I hope others have had a happy Mother's Day although I know for many daughters and sons here it is also a sad day and I do feel for you. Memories last forever although they can be bitter-sweet, I know. My thoughts are with you.

Love
Loo xx

 

[piedwarbler]

Oh Loo, I only know when I chose a home for Mum when she was in hospital they discharged her the very next morning in her nightie before I even had time to go in with some clothes for her - and they crossed out one of her meds because it hadn't come up from pharmacy when they chucked her out, and, as it would have delayed her discharge they just took it off the list of meds! I ended up going back to her old GP to get an emergency supply.

I truly hope you have more compassionate care for Henry and will keep everything crossed for you - can the discharge team social worker not help you at all? Just put your foot down and be firm about your choice.

Sending prayers and thoughts for strength xx You must be truly digging deep for stamina right now... how lovely that you had some beautiful flowers from your children. xx hope they help lift you xx

 

[Saffie]

I'm so glad you've had something to cheer you up today if only for a little while. I also have 2 daughters and both came to see me today, both bought gifts which were lovely and which I appreciated, along with a couple of grandchildren. They live locally which is nice BUT they can't help with the feelings I have or the dread that seems to encompass me from morning to night. I'm going to see if I can get to the CAB tomorrow to try to get some things clear in my mind. If, as you say, I might be able to access our joint account anyway, have I done the right thing in applying to become a deputy. (The conveyancer of our chalet said that the Land Registry said all I had to do was to become a Deputy and I could sell it! Easy! Well, as you know, it's not so.) Perhaps I should have just withdrawn the sale and left it to see just what happened. I was so pleased to get a buyer in the present climate too. Oh well too late now I guess. I have to get to see some more homes too but time seems to just disappear, doesn't it? The daily visits to David seem to take up most of the afternoon - even though his present hospital is only 20 minutes away and I don't stay for much over an hour as he is supposed to be resting - but it means that time is dedicated and one can't go anywhere else much before ,and I'm too tired to do much afterwards. I do hope your consultant is sympathetic, I guess some must be but you're right about the arrogance of many.
ál least you've sent the letter now so you don't have to concentrate on that any more. Have a better sleep tonightx

 

[earth angel]

hi loo

At some time researching various things online I saw on one website a long list of points to look out for/check and questions to ask when visiting care homes. It was late, I was boggle-minded tired from reading so much, intended returning to print it out but now I cannot find this website.

I have an appointment to visit one care home this Tuesday 8 March, and hoping to arrange to visit another Thursday 10 March.

If anyone knows of such a website and could direct me to it I would be extremely grateful.

Time is running out I need to know what I'm doing. I should have printed it at the time..... "never put off until tomorrow what you can do today".

Panic now setting in

I did think I had printed it out but obviously I did not.

Also any advice anyone can offer me would be appreciated.

Each of the two care homes is split into 4 units, one for dementia patients. Each one has its own dining room and sitting room. Husband also has personal care and nursing needs.

My priority is staff who are experienced in dementia. But I am concerned about a dementia unit being "segregated", if you know what I mean?

The hospital he is presently in is for physically and mentally frail elderly people. Some have dementia, some do not. He is a quiet man by nature, more withdrawn now with dementia. But in the sitting room he seems to enjoy listening to the chat, and there are small signs of some interaction with other patients, and staff.

He thinks he is perfectly normal, and still has the ability to recognize what he calls someone being "daft"....

In a dementia unit he may not get this more stimulating environment, from which I do feel he has benefitted, be it only in small ways.

Hope you understand what I mean. Of course his dementia will progress (and has taken a steep downward turn over the six weeks he was in acute hospitals). But he is still "with it" in various respects. Short-term memory almost nil. Lives "in the moment".

Thanks for listenng.

Anxious Loopiloo (Loo)

i know what you mean you really want the best place for him , i would say that you go and visit eac care home and also see how you feel about each one , take your time i feel its very important to have caring people and thats not always easy to fin in alot of the homes, a knoledge of dementia is a definate must, i wish you good luck x

 

[Loopiloo]

How awful Pied, the hospital discharging your Mum in her nightie. There seems to be little human caring now in hospitals, only 'medical care'.

I truly hope you have more compassionate care for Henry and will keep everything crossed for you - can the discharge team social worker not help you at all? Just put your foot down and be firm about your choice.

There is no discharge team social worker..... I have put my foot down and been firm with the Adult Care social worker, but she said social services has nothing to do with hospital discharge. The ultimate decision is made by the hospital consultant.

Thanks for your thoughts and prayers, and yes stamina is running low. But you wont have much of that yourself, do take care and pace yourself, rest.

Love
Loo xx

 

[Loopiloo]

Dear Saffie

I also have 2 daughters and both came to see me today, both bought gifts which were lovely and which I appreciated, along with a couple of grandchildren. They live locally which is nice BUT they can't help with the feelings I have or the dread that seems to encompass me from morning to night.

That could have been me writing the last part. I think your husband has also been in hospital a long time, Henry now four and a half months, and the awful feeling of dread along with the other feelings is unbearable.

Did you manage to speak to someone at CAB and were they helpful? I do hope so.

Yes time just disappears. I am so tired and weary.

Have you been to visit any care homes yet?

Loo xx

 

[Loopiloo]

Dear earth angel

Thanks for your good luck wishes.

i feel its very important to have caring people and thats not always easy to fin in alot of the homes, a knoledge of dementia is a definate must, i wish you good luck x

Yes I agree, especially the knowledge of dementia being a definite must. My first choice of care home does have that. The second choice of care home takes 48 people and only 18 dementia patients, but I was satisfied with their answers to my questions concerning dementia. But not with other homes viewed and not with what I have read of thier lack of training.

But the way things are now going it looks like I will have no choice.

Loo xx

 

[Loopiloo]

Yesterday when I visited Henry he said something which made me ask him what my name was. He looked blank and said he did not know, he had forgotten. Then I said "But you know who I am, don't you?" and he smiled, replied "Yes, you are my mother."

It hit me like a ton of bricks. There have been occasions when I have thought he thought I was his mother, mainly during the infrequent visits with my daughter who lives 150 miles away. He seemed to think she was me. She said on one occasion when I went to speak to a staff member he referred to me as Maggie, his mother's name.

But yesterday it was just we two, he has always known me when together. The staff say he is always asking where I am. I cannot believe how quickly his dementia is progressing since he went into hospital in November. He no longer remembers home, the name of our town. It is horrible to think he now may not know who I am. But perhaps tomorrow he will.

I asked a carer if I could speak to a staff-nurse, to give her the letter I have written to the consultant, and was told they were attending a meeting.

I noticed the junior nursing staff were strangers, havng a chat with one she said they were Bank Nurses. Two young girls and a young man. When two senior nurses did appear to talk to them, they were also strangers to me. Only one carer and the domestic staff were familiar.

Of course it is the school Easter holidays.

I beckoned the staff-nurse, gave her the letter and said it was important. Could she make sure the consultant received it. She asked what it was about and went to open it, addressed "For the Personal Attention of the Consultant Dr ******. I did not say what it was about and perhaps my expression stopped her in her tracks from opening the letter - at least in front of me.

The other senior nurse said the consultant was not in this week, he is on holiday and won't be back until 20 April. He doesn't have an office in this hospital but they could forward it to his secretary.

Why is nothng straighforward. I felt desolate. Will he ever read it. Will it be sent to his secretary who will open it, then add it to a pile of stuff he will deal with on his return from holiday. Probably glance at it and toss it aside.

He may have sanctioned Henry's discharge from hospital during his absence. The Social Worker did say they wanted Henry out of the hospital "in the next week or two" and now one week has already gone.

What a waste of time, effort, emotion and anguish writing that letter.

Today I am visiting a care home outwith our county, which from what I have read I would not choose. It takes 71 people, I don't know how many have dementia but they sound to be on the top floor. The CC Report expresses concern about the staircases. It does not sound to have a lift, as do others. Last May it had an enforcement order placed on it, stopped taking any more people. That has now been lifted.

It has one vacancy. Since the only other care home on the recent list of 6 with a vacancy is the awful one I have already visited, Henry may go to the one I am visiting today.

I feel utterly desolate and helpless. As I have said, what is the point of being Henry's Welfare Attorney when no one pays the slightest bit of notice to that. When he was discharged from the acute hospital where he had his surgery, the second hospital obvously found him a nuisance. They bumped him up the waiting list for the present Community Hospital. The have been excellent, and have helped him as much as they could.

They do need the beds, it is past time for Henry to have been moved on, but social services - the social worker - dragged their heels. But now there is urgency and great pressure on me.

The day after submitting my care home choices and being told Henry was top of the list of my first choice, the SW phoned and said he wll have to move into an interim placement.

He is an elderly man with dementia taking up a bed in the Community Hospital for physically and mentally frail older people and they just want rid of him. Where he goes is of no interest to them.

It is out of my hands, there is nothing I can do. For four and a half months of hospitals I have tried and tried to safeguard Henry's welfare, all in vain. I feel I have aged 10 years in over 4 months, although being 76 is no spring chicken. But the tank is empty, there is no more fight in me. No one cares. Except me.

Sorry.

Love
Loo xx

 

[Izzy]

Oh Loo. I am so so sorry for your situation. You sound so helpless. I wish there was something we could do to help. Thinking of you as always. xx

 

[Saffie]

O Loo, you've made me cry. Not a hard thing to do these days I have to confess but I feel so sorry for your plight. I'm not quite there yet - though could be any day - as I'm not actually being pressurised at moment but it will come. Yes, there ARE people who care - the trouble is they aren't the ones who influence matters. We all care but are as inefectual as you are.
It is so unfair.
I didn't come onto the TP last night as I was so exhausted even though I could really have done with expressing my misery. (Just as well maybe as it wouldn't have helped anyone but me!) I actually had to leave my husband's room yesterday as I didn't want him to see me crying and I just couldn't control it. He was in bed, supposed to be resting - they all have single rooms in this Community hospital - and another patient was shouting at the top of his voice and banging his wheelcahir against doors walls etc whilst another was shouting "Murder" and yet another, a lady, wandering around crying for help and calling for, what must be a vast army of, relations, by name.(These things happen most days) Poor David was never going to get any rest. He just lay there with little response to anything I said and what there was I couldn't understand. The Care assistant was kind though I said she was wasting her time if she expected him to get anyr est. It must be hard for them and the nurses too and they are lovely there.

Loo, my husband has thought I was his mother too on occasions and he often doesn't know just who I am. I think he knows he knows me but not how. I reckon he thinks I'm another Care assistant most of the time.
I was going to see another Nursing home this afternoon. A neighbour was coming with me - I hate going alone as I don't get the chance to observe enough when I'm either speaking or listening. However, I am just too tired - and it's raining and cold and the home is some distance away. I was really going to see if it was feasible for visiting regularly but, as I'm giving it a miss today, perhaps that tells me it's not. I'm off to visit David now - hope I cope a bit better than yesterday.
Feeling for you Loo, keep your pecker up - or what is the Scottish equivalent? Both my daughters have been married to Scotsmen( not now though) so perhaps I should know.
Speak to you soon.X

 

[Jo1958]

Loo, hi
Sending love and support, virtual hugs and understanding.
With kindest regards from Jo

 

[nocturne]

Loo, you never need to say sorry for expressing your feelings. We all care very much what happens to you and to Henry but are equally powerless to make things right. I think that dementia sufferers often think that their wife or daughter is their mother because their minds are going back in time and the person they associate with the caring role is Mum. Certainly my mother often thinks of me as her mother or occasionally a "kind neighbour" "little cousin" or worst of all "old schoolfriend"! As Henry probably thinks of his mother as someone to whom he can go for comfort he is, in a way, paying you a compliment.
When I had to let Mum go into respite whilst trying to find a permanent place for her I was told that as long as I could move her within 6 months to a year this would not cause her any problems. It is a hassle for you but it is quite likely a place will come up in your chosen home within that time scale. Just make sure SS accept that you cna move Henry there as soon as a vacancy arises. Get it in writing if you can.
You have done your very best for Henry. no one could have done more. We may manage the occasional small victory against the system but sometimes you just have to settle for the best you can achieve within it.
You sound absolutely exhausted and in need of a hug which I am sending your way.
Wishing you a peaceful night and a brighter day tomorrow.
Jan

 

[Contrary Mary]

It is out of my hands, there is nothing I can do. For four and a half months of hospitals I have tried and tried to safeguard Henry's welfare, all in vain. I feel I have aged 10 years in over 4 months, although being 76 is no spring chicken. But the tank is empty, there is no more fight in me. No one cares. Except me.

Dear Loo

I've been reading your thread regularly and you have been given such good advice from so many people more qualified than I am to help you in your predicament. All I can do is to add my voice to the others on TP to say how much we care about you and Henry in this horrible situation. You have tried your very best for Henry despite all the obstacles being put in your path and I can imagine a little the despair you must be feeling.

Sending love and support to you
Mary
x

 

[piedwarbler]

Dearest Loo

First of all, the comment Henry made addressing you as his mother. I know that must have hit you like a ton of bricks. To Henry, it will comfort him to think you are his mother. I tried to see it that way when Mum stopped recognising me and saw me as just a nice lady who visits. As long as she is comfortable with whoever she thinks I am, I try not to mind about how I feel about it. I know it's worse for you as you are talking about your life's partner, & I am only talking about Mum, but maybe it helps, just a tiny bit, to think that Henry is comforted by the thought you are his mum. I laughingly say to Mum, "Am I a nice lady? As long as I'm not a nasty lady, that's ok."

This probably is very little consolation to you right now. I can't imagine how you feel.

On top of that, you have this terrible situation with the letter to the consultant. I fear that you are correct, your letter will sit on some desk, ignored. I only say this because I have lost count of the letters I have written to GPs and social workers begging for help for Mum. I have no evidence any of them were read or taken notice of. But YOU know you have written this letter, and you have Tried Your Best. So you can do no more.

You will recover from this series of setbacks, Nan, because I know you are strong, and you will regain your fight, though it may not be straight away. In the end, you will not give up. I don't believe you will. You had set all your hopes on this letter. It is a terrible blow that you have had today.

I survived - and still survive, by believing that what will be, will be, and just trying to hold on in there. I think you are going through far worse worries than I have had, and I don't know if any of this even touches at how wretched you must be feeling, but I don't know how else to try and comfort you, except to say you are always in my thoughts.

Maybe there will be some light at the end of your dark tunnel soon. If TP members wishes could work miracles you'd have one tonight xx

Love,

 

[Nan2seven]

Dearest Loo,

I am so sorry to read how desperately low you are feeling. I just wish there were something I could say or do that would lighten the load a bit for you. I think of you so often, fighting on Henry's behalf, and the situation you find yourself in.

Brian has taken me to be his mother lots of times (but I think Brian was always a few steps ahead of Henry on the "dementia road".) I was also frequently taken for a cousin, whom he never sees now but I think was close to him in childhood. Back in the days when I could still take him down to the beach hut, he would remark (and I thinking he knew who I was, sitting in the driver's seat beside him) "My wife has a little car just like this one. They're good, aren't they." I used to wonder how long he had been thinking I was someone else. But, as in vascular dementia, everything could be different within the next ten minutes, not necessarily 24 hours later.

I would have been so VERY annoyed at the nurse's going to open your letter to the Consultant. You must have been wearing a thunderous expression to stop her in her tracks. Well done you. I think a word or two from you would not have gone amiss, either.

Dear Loo, I so wish there were something helpful I could suggest. All I can do is send you my love and warmest wishes for something good to come out of all this hard work you have put in on Henry's behalf, and an end to all of the stress you have faced.

Thinking of you and sending love,
Nan XXX

 

[Loopiloo]

Dear Christine, I hav jut logged on and I don't think I acknowledged your earlier post, about advocates.

We do have a Princess Royal Trust for Carers in this area. I have contacted them in the past, but kept getting the same woman on the phone telling about carers evening meetings and trying to get me to attend lunch meetings. She meant well but I had phoned about serious matters I needed help with and had to try to get through to her , that perhaps later, but so much was going on I simply had neither the time, energy nor the interest in social get togethers. I said it nicely.

I dd not know the Carers Trust could provide advocates for carers needing help. Or give advice about this. I shall keep it in mind but at this exact moment in time I'm in a quandary concerning care homes..... having visited another today.

I have contacted Alzheimer Scotland a few times a while ago, after Henry's 2007 diagnosis and I became a member, but did not find them helpful. Then twice last year concerning doing a Power of Attorney. Again they were not helpful. In the end it was the Office of the Public Guardian who helped with that and gave me excellent advice. Alzheimer Scotland does not cover our area very well.

In fact not much does, although we do have a local CAB - with very limited opening times.

Sorry to sound complaining, just saying how it was for me. I think the English Alzheimer's Society is better.

Difficult for you when your Mum's care home is so far away. Our county is the smallest in Scotland, with a high percentage of older people but few care homes. The two counties surrounding us are vast, also rural, and their care homes are too far away.

I was thinking today that although Henry's surroundings would matter to him as he presently is, the time when they no longer matter may not be far away. The dementia spiral dowards can occur so swiftly, and for Henry certainly has over four and a half months in hospitals. Yesterday for the first time he did not know my name and thought I was his mother. Henry like your mother is now losing words, I struggle to make out what he says at times (which frustrates him). So my priority is the care. I spend a lot of time asking care homes questions and discussing care, staff, trainng.

It is heartbreaking isn't it to witness the decline, I struggle to keep the lid on the emotions with so many practical issues to deal with, but it is a struggle. I keep forcing my mind away from the thought of Henry no longer knowing me.

I hope your Mum's health is improving, as much as that is possible after being so seriously ill.

Thanks again.

Loo xxx

 

[Loopiloo]

Thanks Izzy and Jo.

You do help by 'being there' and taking the time and patience to read my much too long posts. It helps to ease the feeling of being alone and trying to deal with all this, knowing that here on TP so many take time out from their own situations, none of them at all easy, to write to me. You are all special people. It is most deeply appreciated. Many sincere thanks.

Love
Loo xxx

 

[grove]

Dear Loo, Sending you Love & Hugs for the coming Days


You will be in my Prayers tomorrow Loo as you gather your strength once again to help Henry


Have a peaceful & restful night

Love & Hugs Love Grove x x x