A life in the day of.........................

[Loopiloo]

Dear Sylvia

Good news that Dhiren was quite contented when you phoned this morning.

But another worry if all is not being recorded. Possibly the owner/carer has not kept up to date reading the entries? Also a worry if you are not being told everything.

I can empathise with this as I now suspect - well, I know in some instances - I am not being informed about everything. This could be the result of me being in hospital 2 weeks, then housebound, and from 7 March to 5 July only being able to visit Henry 9 times. (Although I phoned) That's a long time for me not to have been around.....

I do hope you get answers next week. We do need to have faith in the care home, and you did have that didn't you?

Wishing you a good visit tomorrow with Dhiren.

Love
Loo xx

 

[winda]

I have started a thread expressing my concern about an incident in my husband's CH not being logged, and I now wonder how many other things happen without anyone being told.

I suppose all we can do is to ask as many questions as we can to as as many staff members as possible so that we can get a picture of what is happening. I have started to do this regarding my husband's eating and drinking. One of the nurses hadn't noticed that my husband wasn't drinking much and so I have asked some of the carers and they have noticed. Now it has been brought to their attention they are trying different ways ( none working so far).

I hope Dhiren is happier when you see him today Sylvia and that you have a good visit.

 

[Grannie G]

Thank you.

I know my worries are minor in comparison to the worries of others but I have trusted the home implicitly because I have had no reason to feel otherwise. Now , little niggles are creeping in. I visit at least 3 times a week and am there for at least 2 hours on each visit, so there is plenty of time for me to be kept informed.

To date, Dhiren`s behaviour has assured me all is well. Seeing him in tears was such a change I cannot ignore it.

 

[winda]

I know what you mean Sylvia. I have also trusted the home but now don't feel so confident.
I think all we can do is judge things by how contented ( or not) our husbands are when we visit.

Is there a quieter area in the home where Dhiren could sit without being totally on his own until things settle down a little? There have been some new residents at my husband's home and it has taken a little time for things to settle again but now things are back as they were.

 

[Grannie G]

Thank you winda.

Dhiren is established where he is and where he sits. I really don`t think it would help him to sit somewhere else. He has no internal knowledge that other rooms are in the same home. To him it would be like moving house.

 

[winda]

He has no internal knowledge that other rooms are in the same home. To him it would be like moving house.

My husband is similar, although he is ok when I take him to his room to listen to music, but he wouldn't stay there on his own.
He almost always sits in the same place in the lounge.

 

[Helen33]

Dear Sylvia,

I have just caught up with the recent events and it saddened me very much to think of Dhiren so upset. Sometimes though, just because we are human, we do have moments of real despair. It is when those feelings of despair remain when there would be great cause for concern. Thank goodness it isn't a permanent state of mind. I agree that it could be an infection and certainly some of the changes. My recent time in hospital showed me how vulnerable I felt when ill and I needed privacy to be ill. Whenmy brother phoned me I burst into tears but it was a relief to let it out. He was distressed of course but it helped me to let it out. I hope this was the same for Dhiren but it is so hard for the witnesses of these things. You have been surrounded by suffering too just recently.

It is particularly worrying to read on TP of all the bad experiences in homes and hospitals but it is my belief that Dhiren's home is certainly good enough. It does need to make changes so it doesn't get forced to close because that would be worse for Dhiren to have to cope with. Let's hope that you working together with the Management and staff can have a positive outcome for the future of Dhiren's well-being. I know how much they respect and like you so you have a good footing to begin with.

Love

 

[Grannie G]

Thank you Helen. It`s so good to see you back on line. xx

 

[thatwoman]

Hi Sylvia,

I'm sorry to see that Dhiren has been so distressed. My Dad had times when he was like this, real despair, and it was hard to know what to do. Sometimes he had woken up and been inconsolable, so I wonder if he had been dreaming something. It was so hard, and worried me so much, but it did seem to pass. Sometimes I could see a reason. The home had a Remembrance Service every year, and Dad seemed to relive some of the horrors of war. Although he only joined the RAF weeks before the end of the war, he had seen awful sights in the Blitz on Liverpool, and then he was in India at the time of Independence and then Partition. He rarely spoke of those things before dementia, but afterwards those memories seemed very vivid. Last year, I made sure that we took Dad down to his room while they had their service. Sometimes seeing things on TV would spark the same memories (he never understood about TV and thought he was witnessing the events).

I hope that when you go to see him today, Dhiren will be feeling better. The changes will be bound to have had an unsettling effect on him. I'm sorry that the owner did not appear to have the facts at hand. Perhaps he was just trying to say something reassuring when he told you Dhiren had enjoyed his bath. The manager of Dad's home said something similar to me a year after Dad had stopped having baths. (Dad had a bed bath instead, ever since he had his first big seizure, because he felt so scared. The manager should have known that, but.....) All you can do is make sure you are there as much as you can be, and hope that the staff will realise that you need to be told of any changes (either in person or by phone if necessary.) I started to email the home once a week with any observations I had (good and bad), and asking for their update. That seemed to work better for me, although I visited daily, because I arrived after work and they always seemed so busy. I know that you aren't in the same position, but it's just a thought. (I started after I discovered that relatives in London and Edinburgh had a much clearer picture of what was happening with their relatives than I had! They told me they were very grateful for the weekly email update, so I decided I needed that too!)

I hope you had a lovely day in London with your grandson. That is important too, Sylvia. I'm not on here so often these days, but I always look for news of Dhiren. I had felt that he and my Dad were walking the same path (although neither of them actually walked), when they both went into their homes at the same time. Sadly, Dad's path was not so long, but I still feel the link with Dhiren.

Love and hugs,

Sue xxx

 

[piedwarbler]

Hi Sylvia

There's not much I can say to help really. Sometimes I too get the idea that the home are protecting me from things Mum says and does when I am not there. I know this because the cleaner might let it slip "Your mum was calling for you all day". The carers never tell me this. Then at the CHC meeting they said they nearly blue lighted Mum to hospital twice - this was news to me but they said why tell me as it would only distress me and they looked after Mum.

I really do feel for you. I do think the changes in seating will affect Dihren and disorient him. Mum was like that - now she never leaves her bedroom she is far more settled. But it seems a poor kind of life, stuck in one room that she hasn't left for a year. I am painfully aware that I am her only visitor and try to take the light in with me when I go.

Love and kind thoughts xxxx

 

[Butter]

I like the wisdom that we all know despair at times, wherever we are. But the CH should include the recognition of despair in its log of a resident.
I know my mother's case was extreme, but I was told of her unhappiness and suffering by nurses and carers. This meant I could also believe the accounts of happy times too.
Life is not always OK - I remember my son's irritation with the eternal smiling faces on children's tv. He knew that was not a truthful picture of how things always are. I think some CHs have the same tendency as children's tv presenters.

 

[Grannie G]

Dhiren wasn`t too sad today but he was quiet.

I spoke to R , one of the owners who was on Duty this afternoon.

S `I am upset that even though I`d mentioned Dhiren`s tears to two carers, including the manager, when I spoke to you on the phone, you had no knowledge of this. Are these concerns written up?`

R ` My apologies. I was not present at the handover. We will observe Dhiren. He might be depressed.`

S `He was also wet through, although I didn`t notice till later. However our son told me Dhiren was wet this morning as well. I know you are short staffed but he shouldn`t be left in wet clothes.`

R ` WE are short staffed but a new cook starts in two weeks and two new carers start soon. I have had to reject some applicants as unsuitable. I will ask for a test for a UTI. `

S `When I spoke to you, you said Dhiren had enjoyed a bath. A few months ago I was told he was frightened of the bath and I was asked for permission to accept all over washing. I didn`t know this had changed.`

R `We never force them to have a bath but we keep asking. Dhiren agrees now.`

S `I would appreciate being told of any changes in behaviours. It helps me to know what is happening.`

R `Of course.`

He gave me his card with the mobile numbers of both owners and said I could phone any time I had a concern. I couldn`t complain further so will continue to visit more frequently and observe.

The sitting room was so full, another chair had been brought in. The new residents and those in for respite were talkative. One was hearing impaired so spoke with a characteristically loud voice.
She asked if Dhiren was my husband, how long we`d been married and said he was a sweetheart. She couldn`t remember how long she`d been married but she had been a dancer.
Another asked where I had come from, told me I had just missed a visit from his wife, etc. etc.
Another cried and asked for help.

I think the chatty ones got on Dhiren nerves and the one who was crying disturbed him.

When Paul visits he takes Dhiren into his room. I`m not sure what to do.

 

[jeany123]

Sylvia, you would think it would be just natural to keep you up to date with what is going on in Dhirens life, especially as you have been so involved , I hate it when things aren't passed on as well, even if they are short staffed everyone should know what has been happening and no-one should be left sitting in wet clothes, I know what it's like having to sit and listen to chatter all day and I can move away from Allen if I have to, and it's only one person not dozen's chatting away and crying , I hope things settle down soon and when the extra staff start things improve, it must be so worrying for you as Dhiren has been so settled,

Jeany x

 

[Linda Mc]

I'm sorry you have had this worry Sylvia but glad you have spoken to the owner and hopefully Dhiren will settle down again as well as the new residents.

 

[Grannie G]

Thank you Linda and jeany.

I will see what tomorrow brings.

 

[Dazmum]

I hope that you have a better visit tomorrow Sylvia, and that Dhiren is not distressed and more himself.

I find that I always have to ask how mum has been and the staff tell me then; she is often tearful in the morning and believes that her clothes have been taken by someone else, when of course they are in the laundry. I'm not sure of this is a policy of our home, waiting to be asked, they do of course let me know if her medication is changed or if she needs to see the doctor and if a memory test is due, which I can attend. Every so often I call into the office and chat about her and ask about anything I'm concerned about as soon as it occurs, otherwise I worry about it. I'm still trying to strike a balance as to how involved and concerned I should be.

I certainly think the things you have mentioned are very important, especially being wet, that's totally unnacceptable. Can you just look at Dhiren's daily notes as matter of course? Dad's used to be in his room sometimes and I used to read them then, whether I was allowed to or not, they were very bried, just a note of how he was every hour. xxx

 

[2jays]

Thinking of you Sylvia. No words of wisdom sorry, just hoping today is better for you both. xx

 

[Butter]

Miserable. I had thought all CHs were obliged to keep a written record of each resident's day. Esp food, drink, sleep, changes, washing and activities. Though , of course, just because it's written down doesn't mean it's accurate.
I think on-going friendships between residents' regular visitors can help. My father was comforted by a wife telling him how kind the staff were to my mother when she was upset in his absence.

 

[geum123]

So sorry to hear that Dhiren has been distressed Sylvia.
I hope it will be better for you both today, and also that some of the
concerns you mentioned in your conversation with the home
have been implemented.

Love Geum. xxxx

 

[cragmaid]

I am sorry to read of these changes and also that you are not being kept up to date as much as you would like or, indeed, are entitled to be.
I suppose this may well be the start of a period of change in Dhiren's illness, and naturally, this brings fresh anxieties. We know that things cannot stay the same, that there is no set timetable for the progression, but, because this is an illness which can be made a bit more comfortable by routine, when that routine changes, upsets happen.
Thinking of you and sending love is all I can do. Love Maureen.x.