A wave from Deborah B

[DeborahBlythe]

I have been reading comments on TP about whether or not to care for someone at home and whether or not to carry on working etc. For what it is worth, here is my situation.
I have been unable to work since March because my mother's care needs, despite being in formal 'care settings' such as the hotel/home, hospital, EMI wing and nursing home always seem to me to be quite poorly addressed. So, as an early-retiree with time on my hands, I have spent my energies trying to get her the best possible care in whatever setting she has found herself and working with carers informally to care for my mother, feeding, washing, toiletting, dressing her, taking her out into the grounds, and giving her as much of my time as I could manage. I have also tried to act as her advocate beacuse I have experience, in a former life, of providing advocacy.

Increasingly, as she has grown frailer, I have felt that Guilt Monster climb aboard more heavily, because I simply have very little faith in care homes. I see things, practices that I think are often mediocre if not downright poor. I would love to scoop my mother up and bring her back to my home, but I know that I wouldn't be able to manage and that has frequently reduced me to howling desperation. I wish that there was just one home in which I had total confidence, but I haven't seen one yet, and I have visited a good number this year.

My mother's final years are not going to be that sunny decline that I had always imagined but I am going to try and make sure that they are as comfortable as they possibly can be. However much I dislike care homes I do not think I could cope with my mother either. In fact I am certain of it. So I have tried to raise my concerns about her care in as constructive a way as possible and when I feel that care is good, I am extremely positive about it. I'm not always unsuccessful.
I have sought out a part time job near to my mother's present care home. When I was going to go for the job interview, my mother actually gave me some advice which was helpful, ( " Go and find something you really love doing, and go and do it. Tell them how passionate you are about the job, at the interview") So I did, and I start the job next week.

I still often feel guilty and depressed, but I think (pray) this activity will help me to retain my own health and ability to help my mother. The isolation of joblessness is a really daunting, soulless place to be and I need to protect some part of my life and health away from the focus on my mother, both for my sake and hers. At least that is what I am telling myself. Please wish me luck. Kind regards to everyone who has managed to read this through to the end!, Deborah

 

[Amy]

Hiya Deborah,
Welcome to TP, and thank you for sharing your story. Here's wishing you all the best next week with your job, and Many Happy Returns to your mum.
Do let us know how you get on next week.
Love Helen

 

[Cate]

Hi Deborah

Welcome to TP, your story is very moving.

You have clearly done all you can for your mum to ensure she has a good quality of life in the circumstances. She also seems to be a very wise lady in the advice she has given to you. Yes we all suffer from visits from the guilt monster, but you have to take a deep breath and flick them off.

I wish you every success in your new job and hope it provides you with not only job satisfaction and company in that setting, but also a social life along the way. Sometimes we can get so wrapped up in caring/worrying about our loved ones, our own lives pass us by, it's not a rehearsal for any of us, you have to live for the moment, and tackle tomorrow when it comes.

A very special happy birthday to mum on the 5th

Cate

 

[noelphobic]

Hi Deborah and welcome

Your post echoes a lot of my own experiences and feelings. My mum was also 'evicted' from a 'care' home and we tried to get that decision overturned. There were obviously misgivings, because we had doubts about their care of her in the first place and the circumstances that led to her hospitalisation, but we felt they handled the situation badly and weren't prepared to allow my mother to be treated in that way. I won't bore you and everyone else with the whole story, as it has been posted here before. Let's just say it ended up as a complaint to the CSCI and now I have no faith in them whatsoever!

I find that her present nursing home is very well thought of and somehow it is 'not the done thing' to make any criticism of it. My feelings are that even the best residential homes fall down when it comes to actually sitting down and talking to the residents. They may look after their physical needs very well but need to take a more holistic approach. The argument is often that the staff are underpaid/overworked etc and I do believe that to be true. However, I do think that when staff aren't actually performing physical care for a resident there would be much to be gained by both parties by mutual interaction.

I also struggle with periodic episodes of quite severe depression and when I am in the midst of that I find the whole situation extremely difficult. I delayed making a complaint to the CSCI last year because I was suffering from depression and needed to recover from that before I could deal with it. Their ultimate response almost sent me back into the pit!

I am presently studying with the OU and my present module is about residential care. One of the 'models' discussed sounds very much like the type of place your mum was in. It is presented very much as the ideal prototype but one does wonder ...

 

[DeborahBlythe]

Talking therapies

Many thanks for the swift and kind replies from Helen, Cate and Noelphobe. It was lovrly to know that someone is out there listening and caring. Really kind.

Re the lack of contact with residents in care homes by the staff, I couldn't agree more. I have raised this with my mum's current care home and have been told that my mother doesn't really need more than she gets but I think that gentle supportive company to make her less isolated would be not hard to organise, and would be useful for her. I know she likes to sleep a lot, but there are also times when she is wakeful and lonely and tearful. The carers have told me they are all too busy to spend meaningful amounts of time with her, so I am trying to see if the palliative care service will send in a befriender for her. I am not asking for constant glittering conversation or any tasks more burdensome than offering her tea and a chat, but it is amazing that this seems to be so hard to come by.

As for CSCI, well after my experiences this year, I am quite reluctant to contact them. I was in regular contact with them before and this created some friction with the home/hotel place. I think they are well-meaning enough, and their standards look good on paper, but the relationship between relatives, residents and care homes is pretty fragile, it seems to me and bringing CSCI into the equation is a risk in itself. Also, I think that the CSCI inspection services are themselves overstretched. It is not hard for care homes to find reasons why, if they do not wish to do so, they cannot care for residents, and it is really difficult to find somewhere that instills any confidence, so my view is that the care homes have us all over a barrel.

I'm sorry if this sounds very gloomy, and perhaps things are more impressive outside London. In London, I have found, the care homes are all full to the hilt, carers are poorly paid and overstretched and the services for people with dementia have to be fought for at every stage. I'll be glad to hear that things are better elsewhere, if this is the case.

I will give you the benefit of my thoughts on Assisted Living -type homes later...

 

[jenniferpa]

Hi there, welcome to TP (as usual, I'm a day late and a dollar short )

I have some experience with the Assisted living/hotel concept - this is the type of residence that my Mother is in. Thankfully, the whole kit and kaboodle is run by the same company - having multiple entities to deal with would be a nightmare. She has been there almost a year (following several strokes) and so far, so OK. I won't say good - good would be if she could fully participate in everything they have to offer, but the care staff have been excellent. Having said that, she was one of the first residents, and as such, had a lot of care and attention showered on her (also, she's a pretty amusing person, my mother, so she's quite easy to deal with). I do worry, though, what's going to happen when the facility fills up - there are only so many hours of the day. So, if anyone has any ideas about how to get a befriender, I would be delighted to hear them. As it stands, I have recently upped the number of carer visits, just to give her someone to talk to. The one downside to this sort of living arrangement is that she is somewhat separated from other people (i.e. residents). She is, however, adamant that she will not move into the next door nursing home. I sometimes think that in that situation, she would have more contact with others of her own age, not just carers (no matter how nice they might be).

Jennifer

 

[Kayla]

My Mum went into a Care Home in 2005, when it became clear that she couldn't cope alone in her own home, even with a cleaner and a carer several times a week and I was calling in nearly every day. The Home was lovely and she was very happy there, but why did they have to do everything for her (even putting away her clean clothes) when she'd been coping with her own laundry at home? Unfortunately she broke her hip and needed to go into a Nursing Home for the Elderly and EMI, although luckily she was moved into the general nursing section after a couple of weeks.
She took a long time to settle and wasn't happy at being moved after only three months in the Care Home. It seems a shame that homes can't take people in at a variety of levels, so that elderly, confused residents don't have to be moved when they are too ill or have had a bad fall.
Mum would have benefitted from sheltered accommodation at an earlier stage, as she has been disabled through rheumatoid arthritis for 26 years. In our area, sheltered accommodation is only available to people on low incomes, not to owner occupiers, and small bungalows tend to be bought by families and extended into bigger properties, so it is difficult for the elderly to downsize. Mum loved her garden so would have been miserable in a flat. At the same time, new houses are springing up like mushrooms all over Kent and yet so many people would like to live in a smaller property, if it were available in the same area.
Although the staff in Mum's NH are kind and caring, I do feel that more could be done to give the residents something to do and they need more than just their physical needs being met.
How wonderful it would be, to have befrienders in Nursing Homes and people to just talk to the elderly. I'm Mum's only regular visitor, but her friend rarely sees her daughter, and other residents also have few visitors. There might be people around who would go into NH's if invited and encouraged. The local Hospice seems to have plenty of volunteers to help out, so I wonder if private homes discourage outsiders coming in, or whether people are just put off by the EMI label.
There is no easy answer to caring for frail, confused elderly people, but if they are in need of 24 hour care, a residential home seems the best way to provide it. I feel confident that the NH are looking after Mum so I can have peace of mind that she is safe and surrounded by carers.

Kayla

 

[DeborahBlythe]

.
How wonderful it would be, to have befrienders in Nursing Homes and people to just talk to the elderly.
Kayla

It was a suggestion by a palliative care nurse attached to a local hospice that maybe they could send a befriender in to see my mum. However the best laid plans do not always work out. The befriender popped in one day without warning and my mum didn't really take to her. It might have worked out if I had had the chance to talk to the befriender first. I don't know. The palliative care nurse reported that the befriender had felt 'out of her depths ' with my mum, who can simply 'turn off' when she doesn't want to be involved in something. The befriender, bless her, was a volunteer more accustomed to taking people off for shopping trips. A taciturn demented old lady must have been a bit formidable, I guess. Now the home has agreed to ask its 'Activity Coordinator' to visit my mother for 'One to One' visits. Lord knows if this will help. I have suggested that she sits and talks or reads poetry to my mum. The home says it cannot free up any carers to pay more frequent visits, even when I offered to pay for this to happen.

She made it past her birthday ( my mum, that is, not the Activity Coordinator) She seemed pretty comfortable and happy that day, so that was a bonus.

Christmas Day was dreadful, but my mum enjoyed a social event on the 14th, from behind the comfort of feigned sleep and the protection of a glass of mulled wine. ( Thank you Noelphobe for your thoughts on the best way to depart this life. I thought of you as she drank several swigs before screwing up her face in disgust!) Unfortunately this facial expression of disgust coincided with a vocal rendition by a guest entertainer, a heroic older lady, singing, in a haunted voice " How would you like to be, Down by the Seine with Me...?"

Later my mother commented " She has a good voice", and meant it, so I know she was enjoying the afternoon. Hats off to the brave performers who try to cheer us all up!

After her good advice about the job hunt, I decided to tell her that I had now got a job, thanks partly to her advice. Of course she didn't remember advising me about anything, and when I explained what the job is (nothing stunning, just working in a shop near her home) I made the mistake of asking her whether she thought it was a good idea. Her answer was ' NO', to my dismay, and then she said " Oh dear, I am supposed to encourage you, aren't I?"

I shouldn't be expecting so much from her. I guess I am not making the allowances I should, and putting too many expectations on her. The new job is stupidly hard. My back aches a lot and I am a bit chastened by the lack of facilities for the staff. I'm supposed to be managing the shop but I can't even work out how the b....y till operates. There's stress for you. ( I'm joking here. Sometimes it's not always obvious!)Never mind, at least it gives me something different to fret about.

My mum has good days and bad days, as you can tell, and good and bad moments within each day too.

I usually say it has been a good day if I have managed to elicit a smile from her. I remember she smiled when I told her I had left my Christmas breakfast, a kipper, in Sussex, but nothing to report today, ( written New Year's Eve.) Yesterday she seemed pretty lucid and I felt so happy that I sang to her. When I stopped, momentarily to ask if I could do anything for her she just said one thing " Shut up", which kinda undermined my songbird routine pretty fast. Then she said again that she was in pain but when I tried to work out what sort of pain, or rather to confirm what I thought was the cause, she wouldn't speak to me. Said it was no use talking to me, she wanted someone different because I was 'always on their side'. Difficult not to take this really personally. I'd give my life for her if it would help.

Then again she does still know who I am, however, so there are still blessings to be counted . It's a shame the person she recognises is that dreadful idiot who forces her to listen to ageing divas, ( I include myself here, natch), sides with the enemy and arranges poetry readings..

Much love to all who have helped me over the last few weeks, and a happy New Year to us all.