When will there be some ladders in this game?

[Loopiloo]

Dear Saffie

I have to agree that Dave is just the same. When he started to sing Unchained Melody cheerfully yesterday, Irealised that I have not seen any one of the residents even vaguly happy on that wing. True, most are very infirm and perhaps some of those in bed are happier but most around seem to moan. Only the carers are cheerful - which i suppose is something. I think some of those in other wings are better or seemed to be when we went to the singing anyway

No one in Henry's wing appears happy, just the carers who are cheery. Although one woman is more 'with it', smiles and says hello and often remarks on what I am wearing. The only sign of dementia I have seen so far over three months is that she often asks if her father is alright, and he must be long dead.

Today the zoo visit was in the wing opposite Henry's, same floor, for elderly frail. Except for two men who chatted to the girl, the others seemed similar to Henry's wing residents - to have dementia. This surprised me as I have been through one of the other two elderly frail wings downstairs and most of them are elderly but no noticable signs of dementia, sitting chatting away to each other. But the wing we were in today, none of them seemed very happy, and some very ill natured!

Yes perhaps Dave does have moments when he is aware of exactly what is happening to him, hence his tears and fears? Henry has not had that sort of awareness since he went into hospital, that he was in hospital, had surgery, the illnesses etc. But he knows he is somewhere he should not be, and as you know, the constant need to come home.

I think it wise of you to have a Tuesday (at least) off from visiting, and it is a lot to be looking after the grandchildren, going to your volunteer afternoon and then also visiting Dave. Also sounds a good idea to gradually becoming more involved with the WI activities, get to know other people, even if you start by going only occasionally to something.

It is early days into this new life of a husband in a care home, I wonder if I will ever adapt, and although I promised myself things I would do some days, when I don't visit I am busy doing other things plus too exhausted. But just as I was determined to visit the Art Exhibition this year, there are another two things I would like to do before the days shorten and I wont drive home in the dark. Not holding my breath though. Not sure I am ready to do such things, this half life still very much revolves around Henry.

I empahise with the friend who has evaporated. I have had a similar experience, a long standing friend for whom I was there during difficult months in her life, and who has always said she would be there for me. Not that I was looking to be 'repaid' but we were good friends who shared a lot, and then abandonment.....

I also have a next door neighbour who has never mentioned Henry since I told her back in February that he would not be coming home.

We do sound to feel the same about the homes, although the location of Henry's is not ideal, on a main road, and the garden is sadly neglected. Some of the armchairs need replaced, this wing isn't as 'up market' in decor and furnishings as some of the others but I suppose in a dementia wing accidents do happen, armchairs suffer, and carpets.....

I am very tired tonight, and not feeling too great today. Everything aching and a dodgy bowel, I do have two chronic bowel problems. Hope better tomorrow, I shall be visting Henry again and then several things to do afterwards.

I actually walked out on Henry today. Quietly. All was well during the zoo visit, but later...... I shall write on my thread tomorrow.

Hoping you find Dave better than your last visit, shall be thinking about you.

With my love
Loo xxx

 

[Saffie]

Dear Loo

I didn't post last night as I was so very tired . I had an early night - much good it did me though as I woke with a bad head. I haven't visited today as my younger daughter, whose children I've been loking after said she and my grandson were going in to see Dave this afternoon. I did intend to go as well, a bit later, as she doesn't stay more than an hour but after taking codeine, I decided I'd do better to lie down and try to get rid of the headache. I've sort of succeeded but not completely - and my typing now id all over the place, I'm having to correct practicaly every word!

Dave was very weepy yesterday. Not with the face crumbling of Monday, just weeping. He started as soon as I arrived and when I asked what was the matter, he said he'd had this fall. His named carer came into the lounge so I asked him and he said no, nothing had happened. When I left I said I was popping to the shops as usual. (Good job I've sold the chalet - all that shopping I'm doing!)

I also asked his carer why he was wearing his pyjama top! He said that he hadn't been there in the morning but it looked like a nice T shirt so the person who dressed him would have thought it was a T shirt. I replied that I'd put a sheet of paper in the drawer saying "These are pyjamas - Tshirts are in the drawer below." I added that he has a number of 'proper' shirts hanging in the wardrobe and another 30 or so at home I could bring in to replace these! He thought this very funny. I must say I do like him, he's always cheerful. The trouble is that the laundry gets put back on a shelf in the wardrobe, regardless of what it is. I sort it out when I go but this is often too late. Another trivial niggle, like the quality of the ironing, which I shall try to overlook.

I cannot understand why the shirt sleeves are beautifully ironed no attempt made to iron the front placket. I'd do it the other way round!!!

I'm wondering if seeing me is upsetting Dave, just by association, rather than anything definite. He was a bit like this in the community hospital, and the General, come to think of it but he knew where he was then. I recall saying to the nurse in the community hospital that I wondered if I was not doing more harm than good, going every day. Perhaps seeing me reminds him somehow that he is not at home- or where he wants to be. I don't know but something obviously upsets him. I can't seem to discover if he gets upset at other times as there are different carers/nurses etc. on when I go. My daughter said he was quite cheerful this afternoon, didn't mention me. She only saw the 2 cleaners, no carers and no nurse! I said to her that those 2 cleaners are the most consistent people on that wing, even there at weekends.

My elder daughter started back at the college she teaches in yesterday - that's the end of summer then, such as it's been. I know that children will have gone back to school in Scotland by now too but our's don't go back here for nearly another fortnight. I really dread the autumn and the darker evenings though I remember it being very light quite late when I used to stay with my daughter in Edinburgh. So I expect it's the same with you. I didn't really notice Autumn last year as I was too busy worrying about Dave and to-ing and fro-ing to the hospital.

I've read your report about Henry's Zoo visit and will go on to your thread now to re-read your post and add a comment. love X

 

[Loopiloo]

Dear Saffie

I did intend to go as well, a bit later, as she doesn't stay more than an hour but after taking codeine, I decided I'd do better to lie down and try to get rid of the headache. I've sort of succeeded but not completely - and my typing now id all over the place, I'm having to correct practicaly every word!

I do hope you now feel much better, although you sound to have bad headaches almost daily? Re your typing being all over the place, I am the same when I write on one of my bad days/evenings. That's why it takes me so long from actually starting to write to posting it on TP!

I'm wondering if seeing me is upsetting Dave, just by association, rather than anything definite. He was a bit like this in the community hospital, and the General, come to think of it but he knew where he was then. I recall saying to the nurse in the community hospital that I wondered if I was not doing more harm than good, going every day. Perhaps seeing me reminds him somehow that he is not at home- or where he wants to be. I don't know but something obviously upsets him. I can't seem to discover if he gets upset at other times as there are different carers/nurses etc. on when I go.

I went through this for months, feeling that my visits were doing Henry more harm than good. I also said this to his named nurse during the earlier weeks in the care home. As you say, causing upset by association.

But in hospital, unlike Dave Henry did not grasp where he was, even although I explained to him. The memory of my explanations was not held for long and he was only taking it in as I explained. Yet when he did understand "hospital", he was aware that he would eventually come home, but did not understand why he was there in the first place having forgotten his fall, fractured hip, surgery.

If Dave was aware he was in hospital, and this continued until he left hospital, could it be that he is aware that he is in a nursing home and will never return to his home? Even although his speech has deteriorated, and consequently he cannot express his feelings (even if he chose to do so?) awareness of where he is may be there? Not that this helps I know.

Then there is also the awareness that he has had a leg amputation. How did he take that before and after the surgery? A traumatic and life changing event in his life, could that be a reason for his tears? I don't know how much memory Dave has lost, but unlike Henry's hip surgery Dave can see for himself the results of his surgery. Just trying to think of what could be triggering his tears and upset...

When speech deteriorates it is so difficult to communicate, and try to work out what is going on in the mind. Dave's speech sounds more limited than Henry's even although his is decreasing but I can at least try to sort out the muddled words that comes out. To some extent. Hit and miss at times which irritates him when I get it wrong.

Complete change of subject, yes the children in Scotland are back at school now, their holidays start towards the end of June. I suppose the end of August is the end of summer... I am always so reluctant to accept autumn which in Scotland can so often be more like early winter, I'm still looking for summer in September! When I was expecting Elaine I left work at the end of August and clearly remember that September was brilliant and into early October. We went long walks early evenings in warm sunshine. But this year already there is a hint of autumn during the mornings and evenings.

I also dread the dark nights, and they seem to have suddenly darkened of late. Yes we have later daylight up here. When we caravaned one June just south of London I was quite shocked when it was dark by about 10pm, whereas in Scotland in June it is well after 11pm. The further north, the longer the daylight Again one June we walked our dog on the beach in the Western Highlands at midnight and it was still light.

Most of all I dread winter and still haven't got over the nightmare last winter was. I drove the car the day before Henry went into hospital in November, then two days later it started, and I never drove again until 3 January this year. Not by choice, it was simply impossible to get the car from our house and out onto the main road, all side roads thickly iced over snow. Not to mention the car buried in frozen snow! (We do have a garage but I can't use it) I do so hope winter is kinder this time round.

I hope all has gone fairly well with your visits, Saffie. Yes there are niggles. I now go into Henry's room after each visit to clean his electric razor, which is one niggle, and usually other things niggle me as well but trying to turn a blind eye. I also have to clean Henry's glasses every visit, a small thing but it is all part of personal care. However, must be positive, not 'sweat the small stuff'.

With my thoughts and much love
Loo xxx

 

[Saffie]

Dear Loo

Not a good visit today. Yesterday was an ok one but he was being put back to bed when I arrived at 2.30 as his carer said he was on his own with only 1 other carer who was new and didn't know the residents. I sat in Dave's room with him but he was in a lot of pain with his amputated leg and didn't say very much. I watch TV with him and then put on his male voice choir DVD when I left.

Today, my elder daughter visited after lunch and I went in later, arriving shortly after 3 pm. Dave was in the lounge asleep. As I had taken our retriever in , I tried to wake him which he did reasonably easily - though not very agreeably. He wasn't in any sort of communicative mood though did smile a little at the dog for a second or two but as his chair is so high, he couldn't see her that easily and the dog cannot get up to him because of his leg/foot etc.! It's funny because his carer said he was asking where his dog was this morning.

He has at last now got his new chair - just like the other one but narrower and it doesn't have the nice soft headreast the other one did, which was good for stopping his head lolling to one side when he was asleep. It is a delightful shade of jade green though - rather than the red of the other one!!!

Anyway, back to today. At about 3.45 and with the carers busy with other residents, I assume, I asked a lady who came into the lounge with her walker if she'd had a cup of tea yet, to which she replied that she hadn't. As Dave had no sign of a beaker on his table, only juice, I deduced that the tea was late again so, trying to be helpful as I was last week, I offered to make one for her and Dave, as well as one for myself.

Eventually a female carer came in - I haven't seen her often but I did mention to her once that Dave wore glasses which had been left in his bedroom. I said I'd made the tea,and asked if that was all right as it seemed they might have missed tea when it was given out as the lady had said she hadn't had one either. She replied very huffily that the other (Dave's) carer had made the tea at 3 and they had both had a cup. I said "O, ok, it's just that Dave was asleep when I arrived and I thought that perhaps the carer hadn't wanted to wake him and M.... said she hadn't had a cup".

She said she'd check -came back and repeated that they had both had tea and that they didn't lie. I said that I hadn't said they did and I was just trying to be helpful as M said she hadn't had a cup. "That's what dementia is like!" she replied. I replied that I did know that. Actually, I didn't think M had dementia - she seems as sharp as a button but has very bad eyesight and is quite frail which is why she's on the nursing wing. I began to feel upset as this carer was really quite rude. I very nearly left then but stayed as I didn't think it was fair to leave Dave because of some carer.

In a few minutes, Y came in and she seemed aware as she came over said was I all right. At this point of course, I dissolved and said that I had found everyone there really lovely but ... - then Y said this carer normally worked downstairs but when she came up she was very hard working. Then the carer came back and started to go on the defensive again. I said I hadn't complained , I just was trying to help as I had done last weekend. She asked when - I said I thought it was Saturday - couldn't have been SHE was on last Saturday, so I said well probably Sunday then but it really didn't matter, I was more than happy to help as I realise they are busy. She said people run this place down etc and so on. - I tried to speak, and eventually was allowed to get a word in edgeways. I said I had chosen it from over a dozen homes I had visited and i loved it. I also said about Dave being moved downstairs and how I didn't want him to leave that wing because everyone was so nice. In the meantime, Dave's carer had come in and I then tried to explain to him, but he is lovely and he laughed and was fine. Of course, this was all accompanied by my blubbing - why do I dissolve so easily these days? I wish I could stop.

Y was lovely though , tried to give me a hug but was afraid of the dog (she can't even growl and only barks to go out and in again!!!) But clasped my hand in hers. They all went then and, after about another 10 minutes so did I, as the carer was waiting to put Dave back to bed which would have meant me hanging around for some time while they hoisted and sorted him out.

So yet another rather wet homeward drive. Good job the car knows the way now!!! Isn't it funny though that for every unpleasant experience, there is often a plus side. Last time, with the move downstairs, I found the Care manager and lady in the office so lovely and today, I found that Y is really very kind. I have said before, that I thought she was probably a good nurse and that our original prroblem was one of communication malfunction and I think that is so. I have made an effort with her, to ask about her hoiday etc and be friendly, so perhaps we are now on a better level, relationshipwise. I hope so. I will be really wary with this other lady though in future. I guess they can't all be lovely. Such a little thing though and so blown up into a massive insult or something!

If Dave was aware he was in hospital, and this continued until he left hospital, could it be that he is aware that he is in a nursing home and will never return to his home? Even although his speech has deteriorated, and consequently he cannot express his feelings (even if he chose to do so?) awareness of where he is may be there? Not that this helps I know.

Dave was only aware he was in hospital in the early days of the General hospital. He never realised where he was during the 6 months in the Community one. I don't think he has any idea where he is now and may even think he's at home judging by his reaction when I inadvertantly mention the word. He sort of looks surprised, with a "Well where's this then" expression - and I quickly move on with the conversation.

I do hope you now feel much better, although you sound to have bad headaches almost daily?

Yes, i am having a lot these days , which is one reason why the consultant in the Eye hospital ordered the scan but some are far more managable than others. Sometimes it's just a fuggy head on waking which may clear later, or may develop into a really bad head. I probably don't take tablets early enough but rather wait and see what develops as I hate taking them and the codeine do knock me out these days unlike earlier times.

I too dread the winter, Loo, though you have it much worse than we do. There has definitely been an autumnal nip in the air in the mornings and evenings recently. I think an early autumn is on the cards. The leaves on my spindle tree are turning too.

Must go and have some tea. Sorry to have gone on about my afternoon. I do wish I could handle all this a bit better - maybe one day.

I'll go on your thread later, Loo. Much love to you.X

 

[Loopiloo]

Oh dear, Saffie, I am so sorry to read about the incident with the carer yesterday. What a carry on she made, speaking out of turn and causing you quite unnecessary upset. Not only that but she magnified it, what ever she said about "people run this place down etc". Perhaps she was having a bad day, but no need whatsoever to take it out on a visiting relative, and she blew it out of proportion.

I am glad Y was so nice, and that you now feel comfortable with her and that she was kind to you. Hopefully if this carer works in another wing you wont encounter her too often, and hard worker although she may be, she needs to have a better rapport with relatives. Her attitude sounds totally wrong. Where was her 'caring' side? Relatives are vulnerable as well, especially in this very early period of a loved one going into professional care.

Yes there can be a plus side to an unpleasant experience and really good to read how you now feel about Y. I suppose there is tension on both sides at times, when a new patient and relative arrive, and it takes time to relax and get to know each other. It surely is part of their job in a care or nursing home to 'smooth the way' for new relatives, to make them feel welcome and still very much part of their loved one's care.

Good Dave at last has his chair although a pity about the headrest and I think I know the type of chair (with soft headrest) having seen them in Henry's care home. He likes a high back chair that lets him rest his head, but the staff seem to have changed some of the chairs, replaced them with ones not so high.

I could kick myself when I inadvertently mention the word "home" which I avoid like the plague, and like you I quickly move on, but Henry can be very sharp and pick up on the word, which sets him off...

Like you I hate taking painkillers, especially after a year (some time ago) of attending a pain clinic my oncologist referred me to, where I had all sorts of highly potent pain medicatons. None helped the pain but they did mess me up. I can't function in such a zombie state.

I am also having trouble with tearfulness which until now I have mainly been able to just about control, but I guess it all builds up and does need some outlet. It takes time, and all those months with our husbands in hospitals plus the bureaucracy to deal with, trying to hold it together, plus so much more on a deeply personal level, it all takes its toll. Like you I think to myself "maybe one day..." I will refind my 'normal' self.

Yes the leaves are falling, we have a lot of trees at the top of the garden and whenever I am out there I am trying to gather up leaves, but it is a losing battle!

I hope the upset of yesterday has eased today and that all goes well when you visit Dave. I also hate Sundays, don't know why but they seem to be my most down days.

Thinking of you and sending love
Loo xxx

 

[Saffie]

Dear Loo

Thank you for posting. i have to confess to still being very upset aboout the carer after yesterday's episode. Also the fact that i was so tearful that i didn't actually say what i should have done. When Y came in, she didn't even ask what the girl had said, just kept on about her being a hard worker. Well, that wasn't in dispute, what was was her attitude and manners. I should have said that. All I had done was try to explain why I had made the tea - no accusations, no complaints, and I didn't say they hadn't had their tea. So, today, i decided to take Dave in to his bedroon as soon as I got there.

This I did, shutting his bedroom door. I wanted to try to cut Dave's hair anyway. I've bought a trimmer set but it was impossible to use this as I couldn't get the trimmer between Dave's head and the chair back as it's too high. so I just cut some off with the scissors. I asked over 4 weeks ago if he could have his hair cut and the carer said she'd out it in the book for the hairdresser who comes to the home weekly. I made sure Dave had enough money in his purse in his drawer but it has never happened. I think she did put it in the book but perhaps nobody bothers to look in it. Y came in with Dave's cup on tea when I was doing it and I told her why I was doing it and she just said OK. i noticed that I wasn't offered a cup! Dave's named carer came in later and asked if everything was ok - not sure why or if because of yesterday - but he was quite amused to see the result of Dave's haircut! I said not to let Dave see the back - which is really all there is to see as he has so little elsewhere now! It's not great but at least it's tidier than it was before.

The day after Dave arrived in the Community hospital, (Christmas week!) he had a grade 1 haircut and this is the first cut since so it was quite long! I didn't ask for a grade1, she just did it. My daughters thought he'd turned into his father!

When I left I pushed Dave back into the lounge. I think I might stick to his room for visits for a while and certainly every time that particular carer is on I will stay clear of the lounge. I will also never make tea or offer to help again.

Had another weep in the car, but this time it was on the way there and due to the CD I had on in the car! It was a freeby from the Daily Mail some time ago, featuring tenors and it just got to me. Like you Loo, it doesn't take much at the moment.

Before I went I steamed off a border from my bedroom walls. I moved out of my bedroom for my friends last week and went into the second bedroom which i had decorated etc, earlier in the year - while all the furniture was still downstairs, having been moved there in readiness for Dave's return home. After that one night they stayed, I thought that I'd better stay where I was and bite the bullet and get that room sorted out. I had already ripped out the wardrobes and chests, so now i have to get new carpet and the room decorated. I used to do it all myself but my neck and shoulder problem will prevent me doing it now. I do hate having people in to do jobs too, i never feel relaxed still, needs must.

We have a Bank holiday tomorrow but, I believe it isn't so up with you. You were sensible and kept the old original August bank holiday at the beginning of the month.
I'm thinking of going to stay with my friends in Pembrokeshire one weekend in September. They keep on about it and perhaps it would do me good and I would be able to see my sister too. It would have to be a weekend as this would mean my daughters could visit in my place for a gouple of days. Still, I need to think about it.

I'm going to go and read your new post on your thread now. Are you sleepig any better these days, Loo? I still wake very early even though I am going to sleep later. I listen to my audio books then though, which helps.

Lots of love X

 

[cragmaid]

Saffie, you are going to have to practice with the clippers I can tell! Still as my Dad used to say, there's only a couple of weeks between a bad and a good haircut!

 

[Saffie]

Hi Maureen, nice to hear from you. Actually, the hair didn't look too bad today1 It's not easy to see anyway, for the same reason I couldn't use the clippers- the special chair back is too high! I did ask a carer to remove his name from the haircut list for the time being, once it grows a bit the hairdresser can cut it again.

I bought the clippers for the dog as our last golden retriever used to get eczema and I had to cut her coat with a scissors to be able to rub the cream in. When we bought the retriever we have now I thought the clippers would be better, so bought them just in case but haven't needed them as yet! A sort of insurance policy I guess!!!

 

[Loopiloo]

Dear Saffie

I'm not surprised you were still very upset yesterday about the trouble caused by the carer. It has been going in and out of my mind and I have felt angry on your behalf. The carer obviously got hold of the wrong end of the stick and jumped to the conclusion that you were being critical, and then it all became a vicious circle. Like you I would probably not have said what I later felt I should have done, being caught off-guard and so taken aback and also upset.

I do feel angry and expect you do too. It is a pity the carer should 'get away' with her behaviour and rudeness. This is something Dave's named nurse should be able to deal with, sort out, or his key worker although the named nurse has superiority. (I think? So it seems in Henry's wing) You could also write a letter to the manager. Again at Henry's care home this is in print.

I know you don't want to cause waves, but neither do you want any bad feeling developing and making you feel uncomfortable. No carer should take such an aittutude towards a resident's spouse or relative.

I thought Y was Dave's named nurse but see you mention his male named nurse coming into the bedroom after you cut Dave's hair.

That is another thing that should be addressed. Hair cuts are part of personal care, there should be a care plan written for Dave with his needs and you should have participated in it being drawn up. Perhaps this was done though?

I twice cut Henry's hair in hospitals, well sort of.... it was so long and aged him so much. But he lost lots of hair on top in hositals, hardly anything there to cut. Quite thick at the back and sides. I found the back the easiest as he was quite frightened by scissors when he could see them, but it was rather a hack-handed attempt!

Do you know if there are relatives meetings at Dave's home? The ones at Henrys care home are only every three months, and poorly advertised - and poorly attended because of that. There is an 'Information' file in the lounge which I was shown earlier on, although a few weeks after Henry went in. That is the only place where there is notice of residents meetings. I missed the July one because I didn't know about it, the next is October and I'm hoping to attend it. In a November 2010 the Care Commission Report criticised the C. Home for the lack of information to relatives of these meetings but nothing seems to have improved.

Had another weep in the car, but this time it was on the way there and due to the CD I had on in the car! It was a freeby from the Daily Mail some time ago, featuring tenors and it just got to me. Like you Loo, it doesn't take much at the moment.

I know the feeling. I find music very emotional, and seldom listen to it, yet used to often play our CDs and I find the classical/operas and tenors set me off when I do hear them.

Like you I used to do all the decorating, now I cannot even sand down and paint the extra bannister the social worker had installed for me. I thought sanding and painting it would be part of the installation but have had to arrange that myself, and they come on Thursday - perhaps.... someone will phone to confirm. I also hate workmen about the house. No doubt sanding dust everywhere and they never properly clear up afterwards. But when you can't manage it then you have little choice do you. My living room carpet drives me crazy, it is ancient and badly needs replaced, but first I have to have the room decorated and frankly cannot face the upheaval. Not for a wee while.

Moan, moan, moan!

Scottish banks now fall in with English banks, mostly, so today is a Scottish holiday for banks but no where else.

Oh do have that weekend with your friends in Pembrokeshire, it will do you so much good Saffie. You deserve it. Visiting Dave daily all those months, all the bureaucracy you have had to deal with, all the stuff involved, the worry and the huge emotional impact of Dave's surgery, hospitals, then going into care will have taken its toll on you. A short break before winter sets in would be so nice, and September can be a good weather month. (says she still hoping for an Indian summer!) Go for it!

No, not sleeping much better, really, although I go off to sleep well enough. But pain awakens me in the wee small hours and after that I toss and turn. My mind is awake and full of thoughts and between that and the pain I give up and get up.

Shall pop back later to see if you have written. I'm anxious to hear how your visit to the nursing home went today.

Much love
Loo xxx

 

[Saffie]

Dear Loo
Thanks for posting when I know you have alot of other things on your mind.

I thought Y was Dave's named nurse but see you mention his male named nurse coming into the bedroom after you cut Dave's hair.

No - Y is Dave's named nurse but it was Dave's named carer who came in the room yesterday - the same one who made the tea on Saturday - but not the carer who made the fuss. He is Indian and I really like him, we were getting on really well and I hope Saturday's business hasn't damaged that. It depends what that carer said to him.

It has affected the way I feel about going in to the home now though, much as I wish it hadn't. Today I went into the lounge and wheeled Dave to his bedroom. Two of my favourite carers were on today and after bringing Dave in a cup of tea , she then returned with biscuits for him and a cup of tea for me, without asking if I wanted one first. They were very nice but I am holding back a little bit now.

An Activities organizer came and said they were having tea in the garden, if I could get a carer to push Dave down there but I didn't like to ask them so we stayed upstairs as this chair seems even heavier than the other one so I can't push it far on the carpet- which is all over the home. She did bring up some scones afterwards though and Dave had one of those.

I didn't stay as long as ususal today as Dave was in a very irritable mood. I didn't answer the questions correctly, which wasn't surprising as I didn't understand the questions, just took a random guess and this seemed to annoy him! Eventually, I left after an hour and a half ,whereas I usually stay a couple of hours or more.

That is another thing that should be addressed. Hair cuts are part of personal care, there should be a care plan written for Dave with his needs and you should have participated in it being drawn up. Perhaps this was done though?

Do you know, I am very confused about this Careplan business. There is a file which the SW accessed when she visited the home a few weeks ago but I have never seen it. I also didn't help draw it up. All I did was to write Dave's history on an A4 sheet and fill in those details about End-of-life plan. If you recall, I was waiting for the assessment to take place after 6 weeks but it never happened. I can't even remember signing any contract but could have signed something that second evening when there were various documents around. I still hate to ask Y anything as I am always left feeling she thinks I'm being a nuisance. Saturday won't have improved that either.

I reminded Y about the eye test which is nearly 2 years overdue now, the other day, and she said it was still waiting. The reminder came just after Dave was rushed in to hospital. I might ask another nurse one day when she is off duty as it is not good for a long-term diabetic to miss eye tests. I don't know what is happening about his retinopathy test either as he missed that last year too. The mobile unit used to come to our health centre and when I rang them to say he couldn't attend, they said his new surgery would arrange it it if the unit went there. So much still to worry about.

Incidentally, I did ask the Renal consultant about the dropping of the blood pressure tablets and she said that it was fine as it often happens that BP settles down. Still seems strange to me after over 20 years but there it is.

I did plan not to visit on a tusday but am not sure about tomorrow. I have the grandchildren in the morning so will see how it goes.
I hope your hospital visit goes smoothly tomorrow, Loo. I'll be thinking of you. With lots of love X

 

[Loopiloo]

Dear Saffie

It feels a long time since either of us wrote on our threads, yet it was I think only Monday. Hoping to write on mine later, meantime you have as always been in my thoughts and I wonder how your week has gone/is going?

Two of my favourite carers were on today and after bringing Dave in a cup of tea , she then returned with biscuits for him and a cup of tea for me, without asking if I wanted one first. They were very nice but I am holding back a little bit now.

I can understand your holding back a little now. It is still early days for each of us with our husbands in care/nursing homes, and after long perods in hospitals. I seem to fluctuate between growing confidence in the home and staff, then times of uncertainty, and after your upset with that carer I guess you are somewhat the same?

An Activities organizer came and said they were having tea in the garden, if I could get a carer to push Dave down there but I didn't like to ask them so we stayed upstairs as this chair seems even heavier than the other one so I can't push it far on the carpet- which is all over the home.

Although I understand you not liking to ask the carers to push Dave's heavy chair, you should ask, it is part of their job. Apart from being too heavy for you to push, the home and staff are responsible for Dave and somewhere in the documentation there will be something written about 'responsibility'. I never push Henry in a wheelchair, the few times he has been moved in one (such as outdoors) during visits. A carer has done that with me walking with them.

For instance, if a resident in Henry's home is taken out by relatives, they are fully responsible. Including if they take them by themselves for a medical appointment. Whereas if the resident is taken by a care assistant, the home is responsible.

Think about it. Give it a try, ask a carer to move the chair for you. I'm not being 'bossy'!

Do you know, I am very confused about this Careplan business. There is a file which the SW accessed when she visited the home a few weeks ago but I have never seen it. I also didn't help draw it up. All I did was to write Dave's history on an A4 sheet and fill in those details about End-of-life plan. If you recall, I was waiting for the assessment to take place after 6 weeks but it never happened. I can't even remember signing any contract but could have signed something that second evening when there were various documents around. I still hate to ask Y anything as I am always left feeling she thinks I'm being a nuisance. Saturday won't have improved that either.

It sounds like it has not been well explained to you be either the social worker or the home. I checked out a lot of stuff on the internet to make sure what the SW said was correct. I also got a lot of information on TP. Also had information from the care home from my visits before Henry went there. It was all documented concerning Henry's care home, about a six weeks trial period to see if the home meets the resident's needs etc., followed by the meeting with the manager or senior nurse, social worker and relative then the signing the contract. This applied to all residents, self-funding and part-funded by the LA. Also about the relative having access to the Care Plan. If you have not been told about such matters then you should ask, in our case that person was and is Henry's named nurse, the senior nurse of the wing he is in.

I was also asked to write a history to add to Henry's records and contributed to his personal needs. Although I have it in mind to write a Lifebook expanding on the history, including photos, and leaving it in his bedroom. I know when he first went into the home the named nurse and some of the carers did read the history, but can't see them go back and forth to the nurse's office to read it all that often. It is more likely to be picked up and at least leafed through during a quiet spell if they are in his room.

Also handy during one-to-one sessions. I see these on the notice board from time to time but to be honest have no idea if it has ever happened with Henry, I keep meaning to ask. It would certainly give a carer starting points to have a Lifebook to refer to as Henry would never of his own accord sit and chat about his life.

No - Y is Dave's named nurse but it was Dave's named carer who came in the room yesterday

I reminded Y about the eye test which is nearly 2 years overdue now, the other day, and she said it was still waiting. The reminder came just after Dave was rushed in to hospital. I might ask another nurse one day when she is off duty as it is not good for a long-term diabetic to miss eye tests. I don't know what is happening about his retinopathy test either as he missed that last year too.

These are all matters which Y, the named nurse, should be in charge of and have recorded, and should have discussed with you.

Incidentally, I did ask the Renal consultant about the dropping of the blood pressure tablets and she said that it was fine as it often happens that BP settles down. Still seems strange to me after over 20 years but there it is.

It does seem strange, but although Henry is still on HBP medication, his BP was dropping lower about two years or so ago and our GP withdrew one of the tablets. He remains on the main one though, and another one. She didn't have an explanation for why the BP had become lower and needed less medication.

I'm sorry the incident with the rude carer has affected the way you feel about going to the home although again I can understand as I have at times felt that. As I said earlier, I fluctuate between feeling I am now more confident, and then at times doubts arise. I suppose it is par for the course, no home is going to be perfect and somehow we have to reach a compromise within ourselves? Accept what we can 'live with' and concentrate on the good points?

It is extremely difficult 'handing over' your husband to the care of total strangers. I don't mean in a possessive way. But after over 50 years together, and later years being not only their wives but their carers when dementia struck. Plus their other health problems. Having faith in the care home staff is not an instant happening, it takes time to gain it and something all care home staff should be aware of.

I have to say that if Henry's named nurse ever left I would feel bereft. She is the one I have most confidence in, and although relations with the other nurse are more relaxed, I would never have the same confidence in her, and she is less easy to talk to. Much younger, less experience. Although his key carer is also young, but a genuinely caring care assistant, it shines through. Unfortunately she is not always on the shift as due to her religion she doesn't work Fridays - or is it Friday afternoons - nor Saturdays.

I have read about care homes where relatives are not too happy with foreign care assistants, but I can only go with my own fairly short experience, just over three months. I find the foreign girls very hard workers, conscientious and truly caring, and have had no difficulties with their accents.

I didn't stay as long as ususal today as Dave was in a very irritable mood. I didn't answer the questions correctly, which wasn't surprising as I didn't understand the questions, just took a random guess and this seemed to annoy him! Eventually, I left after an hour and a half ,whereas I usually stay a couple of hours or more.

You can't do anything about it when they are in such a mood, can you, and better to leave earlier - so I have discovered by trial and error. How have this week's visits been? Better or a mixture?

Must go now and have a late lunch. The person who is sanding down and painting the bannister was supposed to come today but has not appeared. The office said they would phone me this morning and let me know one way or another, but did not. I do hate waiting, wondering if someone will come or not.

My thoughts as always
Much love
Loo xxx

 

[Saffie]

Dear Loo
Thank you for posting and your comments, all very welcome as usual. I did write a post yesterday but wrote it off line and was then too tired to put it on to TP! I'll paste it on now. Not sure if this is going to work.....
Oh wonders, it has!

The farm visit yesterday was absolutely lovely. I got to the home by about 10 to 2 and a lot of the residents were by then sitting outside in the garden. The animals were out there in pens on the lawn. I met a carer from Dave’s wing and she said she was just about to wheel Dave down which was nice as I was afraid I would have to do that myself, what with so many others to bring down as well. I had one grandson with me, and my daughter followed with another one.

The animals there were 3 sheep, 2 goats with baby pigmy goats as well. A quite big pot-bellied pig, 2 donkeys, 2 geese, 3 ducks, 2 rabbits, 2 guinea pigs and 2 bantam chicks. I think that was all. They were taken round to the residents to handle and of course, the children were all over them. Dave was sort of interested but only if directed. He did handle the chick and stroked the pigmy goat with encouragement. Not at all as he would have been a year ago. He was an educational volunteer in Marwell zoo, quite near us, for a number of years after he retired and handled all sorts of animals all the time.

There were also various stalls in one of the lounges downstairs including the inevitable bottle tombola and a raffle. Also cream teas were served, probably for a charge for visitors, but Dave wanted to go back upstairs before we had a chance to sample these. Once back upstairs, I did ask Dave’s carer if it was all right to make him a cup of tea - saying because he really hadn’t had one this time!

We spent over an hour in the garden and it was incredibly hot. It turned out to be a lovely sunny afternoon which wasn’t forecasted last night. After we were back in the lounge, the people brought some of the smaller animals upstairs for the people who were unable, or unwilling maybe, to go out into the garden. So I had another cuddle with the baby pigmy baby goat. I loved it - reminded of the pet goat I had when I was a child.

It was a much better visit than Tuesday's as I actually came home early from that one. I arrived in his lounge when they were having a quiz, so just sat on a chair near the door. Then Dave started shouting and glaring at me. So after a word to the Activities Organizer, I went to his room. Once there, a chap arrived to fix the cable of his bed or something, so I went to sit in the quiet lounge I like. After about ¾ of an hour I went back to the main lounge and Dave was still looking belligerently at me, so I said I’d go home, which I did.

As he was in a bad mood when I went to the singing with him last week, I wonder if there is a connection there, so I think I might try ringing up to see if he is going to an activity before I go and if he is, not visit. It is a bit pointless anyway but especially if it adversely affects him. He isn’t usually aggressive but can be very irritable, though I realize that can change.

i hope that wasn't too long winded! I'm now writing in the present so to speak! I was looking after the grandchildren this morning and checked the phone when i returned home to find it wasn't working. i though it was just a blip and had a snack, came on here to read a few posts then got ready to go to visit Dave. I checked the phone again and as it still wasn't working,i thought i'd bring the extension phone upstairs down to see if perhaps the problem was the phone.

Once upstairs i saw that the phone there had slipped off its cradle and that was the problem downstairs. I heard the bleep for an answerphone message ans there were 6 messages. Eventually there was one from the nurse in Dave's home to say that the ambulance was on its way and she hoped I was too1 I rang the home immediately and spoke to the nurse and asked what ambulance? where was Dave going? Apparantly he was going to the General hospital to see the Cardio-vascular consultant, as he did in May. I knew nothing about it as the letter now goes direct to the home rather than to me. I had been wondering why the follow-up appointment hadn't happened but assumed it would eventually and it was just a case of the Vascular nurse saying they would keep an eye on both Dave's heel and his amputation wound. The appointment was 15 minutes away and the ambulance had now left with one of the Activity Organizers accompanying him.

Fortunately, we live much closer to the hospital than the home so i dashed off and was actually there about 5 minutes before they were. A bit miraculously, there was no queue even though it was only 20 minutes to visiting time and plenty of spaces in the car park! I returned to the home afterwards and it seems Y said she had told me earlier this week. Well, unless I am losing it, she definitelly didn't! However, we agreed to differ - I said it was probably a misunderstanding - again!!!

The Vascular nurse was happy with the way Dave's heel is now, lean, no infection and no gangrene - though I did notice a tiny black mark on his toe, similar to that which was on his other foot a year ago. However, she is concerned about the amputation wound and did say that a decision about him being readmitted for a further amputation might have to be taken - and that i would have to make the decision. I said I would be guided by the consultant and I know he isn't keen on doing this because of his state of health and she agreed - that unless the pain he is in is severe, it would be better to leave things as they are. He will continue to be monitored every 6 weeks or so. It is a worry but I am trying to put it to the back of my mind until I have to face it. One day at a time I think is the only way to cope at present.

Sorry for the long post and I realise i haven't responded to some of your comments, Loo. I will tomorrow as i feel quite exhausted now- it's been quite a day, all told!
Sending loads of love X

 

[Saffie]

Dear Loo
Just a quick update really. I hope the person came to paint your bannister eventually.I didn't visit Dave yesterday as the AO told me on Thursday that she hoped to be having a music session on Friday afternoon and she would see to it that Dave went to it. This was in respone to my saying about his being so belligerent on the both occasions I had been there recently when he was included in an activity. I said that in that case i would have a day off.

It gave me the rare opportunity to go to an out of town shopping area to try to find some new bedroom furniture, seeing as I have now just about taken apart all the exisitng stuff. I think i may have found some but not sure.

Anyway, i decided this morning that the carpet had to come up. A fellow volunteer painted the other bedroom for me in February and I am hoping he will come and do this one, though it is a much bigger job. So the carpet needed to go - not a pleasant task seeing as it has been down for over 30 years and the room is about 16x12feet. It was the rubber backed type and of course the rubber had rotted so I was extremely dirty and needing an immediate shower after completing the job as well as being exhausted! I now have about 6 bags of carpet, and the underlying newspapers, to take to the tip!

I'm wondering,Loo, if the reason that I've not been told about Careplans and never had the 6 week assessment is perhaps because it is an LA home. I know I chose it but some people there will not have had the option of going elsewhere. I don't know but maybe some elements of what is expected are just not applicable. Once the new Manager is in place - and he is supposed to be starting this month - there will be a Relatives/Residents meeting so perhaps I will be able to find our more then. I always seem to be waiting to find things out!

I visited Dave today and he was in tears again. Very sad but I couldn't get to the bottom of why, except that I think he gets upset because he doesn't understand what is going on. Wasn't happy when i left either - it does make it so much harder. I wish i could feel happier about everything, or even just more philosophical and accepting about it all. I doubt everything at the moment including decisions i have made. What if Dave would be happier somewhere else? What if, what if - it goes on and on.

Now I'm getting maudlin again - so i'll sign off before i get worse.
love to you X

 

[Nan2seven]

Dear dear Saffie,

Have just caught up with your thread again. Oh, the "What ifs, what ifs", I remember those so well. Sometimes you feel you are constantly reproaching yourself for the decisions you have made, and yet you know you agonised over each one at the time and thought you were making the best possible.

You are a bit down this evening because your dear Dave was tearful and a bit bewildered about where he is and why. Even though we know to expect the not-so-good visits now and then, they are still so difficult to deal with, aren't they, and they take their toll.

I hope you are feeling a little brighter as the evening has gone on, and if you are still not yet gone to bed, I would suggest something a little stronger than a milky drink, if you have something in the house. I hope tomorrow is a better day for you.

Thinking of you and Dave and sending love,
Nan XXX

 

[Loopiloo]

Dear Saffie

Sorry I'm late catching up with you. As I mentioned on my thread in one of my usual over long posts I seem to be in a strange place this past week, some sort of change going on in me which I cannot fathom out. So I feel sort of in limbo. I probably sound quite mad!

Your farm visit last week sounded lovely, much more my sort of thing than giant creepy-crawlies! Quite a lot of animals too. What a pity Dave was only sort of interested when he has worked so closely with animals. Do you feel he has withdrawn into himself?

How lovely that the weather was so hot, it has been the opposite here this past week, really chilly, and the forecast looks awful all over for next week, rain and very strong winds.

You asked me somewhere (can't find it) if I liked autumn. Depends what type of autumn it is, too often up here it is more like autumn and winter have joined up! I love a crispy dry autumn when the trees have a chance to show off their colourful glory, rather than the rain and wind making that too short a spell. I think it was last year we had a superb autumn. However, like you, spring is my favourite time and I love when the first spring flowers begin to appear. Despite the horrors of this year spring meant a lot to me, I think as a result of the horrendous winter. Everything is so new, so fresh and lovely colours, and there is a feeling of re-birth, of hope. What is it you love about spring?

You were wise to leave earlier last Tuesday when Dave was shouting and glaring at you during the quiz and a good idea not to go in if you know he is going to be involved in an activity. I know Henry would be better on his own although his wing's activities do seem far and few between! A visotor told me to buy a diary and the AO will write in it when Henry has been at an activity, so I asked the AO and she said fine. But as she is on holiday next week I'll wait a bit - and rather difficult getting a 2011 diary now to record from May.... although of course I can buy a notebook, and then a diary for next year.

What a rush for you getting to the hospital for Dave's Cardio-vascular appointment, and how strange Y saying she had told you when she had not. She does sound to have a problem with her memory.... leading to misunderstandings. Worrying that the Vacular nurse is concerned about Dave's amputation wound. I hope it doesn't come to more surgery. Yes one day at a time is the only way to cope rather than worrying in advance. It only uses up energy needed for the present, I think. Although often easier said than done.

No the bannister painting person didn't come last Thursday and I am hoping will turn up this Thursday. Best day for me as the fish van comes that day so I'm here. It will need sanded down, undercoat, then they go away and return for the final coat. Not suitable for me the days I visit Henry.

That was quite a job removing your carpet, no wonder you were exhausted. Have you chosen a new carpet yet, and have you decided on the furniture? Think how lovely it will be to have a fresh new room, new decor, carpet, furniture. That is what I need in my living-room but when if ever it may happen I have no idea.

I'm wondering,Loo, if the reason that I've not been told about Careplans and never had the 6 week assessment is perhaps because it is an LA home. I know I chose it but some people there will not have had the option of going elsewhere. I don't know but maybe some elements of what is expected are just not applicable. Once the new Manager is in place - and he is supposed to be starting this month - there will be a Relatives/Residents meeting so perhaps I will be able to find our more then. I always seem to be waiting to find things out!

I don't know, Saffie. But I've read of a number of other TPers where the procedure was the same as Henry's care home. Assessment after 6 weeks then signing of the contract. I had to sign it along with the social worker and the nurse wanted to sign it, not Henry's named nurse who is the Sister but the other shift nurse, a Staff nurse. However the Social Worker said it had to be signed by the Manager.

Yes you should be able to find out more at the Relatives/Residents meeting, you can ask. Didn't you get any wirtten information from the nursing home, a brochure or other booklet giving such information? Why am I asking you that, obviously you didn't or you would know! Sorry!

Instead of waiting to find things out I really think you do have to ask questions. It may be that it is thought you have been more informed than you have. Or simply thoughtlessnes to inform you?

I do feel for you when so often Dave is in tears, unhappy, and it does make it so much harder. I still can't shake off how Henry was in hospital, and also in the care home until very recently. I'm afraid to think that the recent calm period may continue, even although the cost of that seems to be further losses.

I wish i could feel happier about everything, or even just more philosophical and accepting about it all. I doubt everything at the moment including decisions i have made. What if Dave would be happier somewhere else? What if, what if - it goes on and on.

Again I do feel for you and I do understand as I have had similar feelings. I think we have to remind ourselves that the transition to homes is still a very new experience for us as well as our husbands, and it takes time to adjust, to have faith in the home.

I'm writing too much now, getting too tired. I hope today was not too bad a Sunday for you, Saffie, and that there are not too many problems this coming week. I still can't shake that off, although I'm not quite as bad as previously - well, I don't think so.....

How are your headaches?

My thoughts and much love
Loo xxx

 

[Saffie]

Dear Loo
Thank you for posting. Please don't worry about posting as i know you get very tired, as do I, and I always read your thread anyway.

In fact, I am thinking that I should perhaps leave this thread now as it is all pretty mundane stuff - more a blog really and only you and I who usually post here and it might be easier if I just wrote on yours. Would you mind that?

Also, I'm convinced by now that the ladders never existed in the first place - all a figment of my imagination - and I'm sick of the snakes!

Nothing much to say today except that the Senior nurse stopped me as I went in and apologised for the mix up last thursday regarding the hospital appointment. I assured her that it was fine and just a misunderstanding about Y thinking she had told me and me not hinking she had but it was all fine now. I also told her about the possibility of a further operation.

The man in the next room to Dave died at the end of last week so I was told today. I noticed that the name plate was gone from beside the door but had assumed, obviously incorrectly, that it had been taken down to change the name of his carer as he has now left. I only met his wife once as her husband was in bed for most, if not all, of the time and she never came into the lounge. i expect I will get used to this sort of thing happening - not yet though.

I think I'll go to bed now - feel very tired. Very autumnal outside today too - depressing.
Love to you, LooX

 

[pippin_fort]

Do you know what I like about this site? We can all vent our frustration be understood by others who are being similarly treated because our loved one just does not fit the box. The stress and anxiety we all feel is completely recognised. All I can say is hold your ground. In this instance you know what is best for Dave and they should respect any suggestions that you may have. You could offer to loan a chair of his if he still has one in place of the one that they loan you that way no one loses out?

Be strong and confident. He is lucky to have you. From what I have seen of those in hospital they are not all lucky enough to have someone who cares.

Big hug.

 

[Loopiloo]

Dear Saffie

In fact, I am thinking that I should perhaps leave this thread now as it is all pretty mundane stuff - more a blog really and only you and I who usually post here and it might be easier if I just wrote on yours. Would you mind that?

No I don't at all mind that, feel free, and if you want to respond to this or anyting else I've written then just do so there.

Although it is so strange, I have been thinking exactly the same about my thread. It has become more of a blog, and I know I write too much, and it has probably become boring, and as you say mundane.

About a month or so ago I said I thought I'd let the thread draw to an end then I think it was Nan who encouraged me to keep writing... but maybe now enough is enough.

I've thought several times about blogs, but somehow they would feel like writing to myself, as in a diary, which isn't the same.

Also, I'm convinced by now that the ladders nver existed in the first place - all a figment of my imagination - and I'm sick of the snakes!

You sound down? Do you get depressed? I'm not a depressive by nature, quite the opposite, but am presently in the depths of such a black depression.

Although I suddenly burst out laughing earlier on, and it felt good! When I read the letter the man wrote an his thread, title something like one man and his washing machine!

i expect I will get used to this sort of thing happening - not yet though.

You were writing about the death of the man in the room next to Dave. Not sure about getting used to it. There have been two deaths in Henry's wing and I think both the same week or within a week of each other. I wrote about seeing the hearse, then when I was leaving the coffin was being moved from the lady's room through the wing door and I had to come back, etc. It did affect me, and I still think about the lady who died, her daughter who visited.

In face I was rather morose today, seeing the name of a new lady resident up on the door of the lady above, and although I never met the other late resident, bed bound, I pass the room and it also has another name on it. The thought came into my head that all the beds were previously occupied by people who have died, and then I thought about Henry's bed... I wont expand on this but one thought led to another.

I blamed my black depression. Although a bit of black humour also crept in.... Not appropriate but sometimes necessary.

When I was talking last week to the carer who had told me when Henry arrived that she was his key worker, then just three weeks or so later she moved to a donwstairs wing, and asked her why she moved, she said she had been in this wing almost five years and felt like a change.

I remembered her telling me they had "lost a lot" of their residents since Christmas, and I wonder if that got to her, especially when they have been there for several years. Henry's named nurse was really deeply affected by the lady's death and said she asked herself how long she could go on doing this.

Sorry, I'm not being very uplifting am I?!

We had sunshine today although windy, and quite hot in the car but then it suddenly changed to dark grey clouds about 4 o'clock. Later I was out at the bin and ended up doing a bit of garden work - only a wee bit, unfortunately - and dismayed to see how weedy (and mossy) since I last did anything. Suddenly fallen leaves are everywhere.

Hope you have a decent sleep Saffie.

With my love
Loo xxx

 

[danny]

Hi Saffie and Loo. PLease,please keep one thread going.I like reading your posts as I`m sure many others do.Don`t go blogging, I`ll never find you.

There are many people with relatives in care homes etc who will get a lot of help from your threads.

Maybe start a new thread, Saffie and Loos together.

Best wishes to you both.

 

[amicalia]

Echoing what Danny said - please, unless it becomes too hard or painful for you both, keep posting - you both write so intelligently and perceptively - this is so helpful to many.
I understand if you really don't want to, of course.
Ali
x