Like a Hyperactive toddler...

[canary]

Why not leave your coat and bag in the managers office when you first arrive before you see your husband and then pick them up on your way out?
I had to do this for a while - not because of mum, but because there was a lady there who was obsessed with collecting up bags, coats, cardigans and anything else left on the tables/chairs and "tidying them away"! It saved having to have a tug-of-war with her

 

[Rageddy Anne]

Good idea, Thankyou...

Apart from the shortage of drinks, every time I go he almost seems desperate for the toilet, so I don't think they encourage him to go. Instead he seems to be left to have an accident although he was managing before he went there.... And I've seen other people being refused when they've asked for the loo. Rob doesn't know where his room is, but can manage if someone takes him....That really upsets me, so I'm going to look at another place where perhaps it's better.

It's a shame because I think he's settling gradually, but I hardly dare leave him without visitors or myself visiting every day, so I'm not getting much rest.

 

[Ann Mac]

Good idea, Thankyou...

Apart from the shortage of drinks, every time I go he almost seems desperate for the toilet, so I don't think they encourage him to go. Instead he seems to be left to have an accident although he was managing before he went there.... And I've seen other people being refused when they've asked for the loo. Rob doesn't know where his room is, but can manage if someone takes him....That really upsets me, so I'm going to look at another place where perhaps it's better.

It's a shame because I think he's settling gradually, but I hardly dare leave him without visitors or myself visiting every day, so I'm not getting much rest.

Really shocked at the refusal to take people to the loo, Anne - that really isn't on, at all! I get that there are times when staff can be run off their feet, because I've been in that situation when working - someone asking for the loo at meal times, when there are just 6 staff to make sure that 28-30 people get their meal (and several of those people need assisted feeding), losing up to two staff for the 10 minutes or so it can take to enable a toilet visit is difficult - but its one of the things that a carer should never, ever say no to and somehow, it has to be managed. Its non-negociable - or at least, it always has been in my experience. I can fully understand why it would upset you - I would be furious myself.

I understand the tiredness too, hun, and I feel for you You would think that with Mil now not being here 24/7 that I'd have bags of time to recover and feel better, but instead I feel totally wiped out and actually quite low. And its surprising how it cuts into any chance of resting when you have to work your day around visiting - not that you don't want to visit, just that its not as stress-free an experience as you might expect it to be, once you have supposedly stepped back from the 24/7 hands on caring - there is still so much that you have to do and feel responsible for. I've woken with a cold today, not that bad, but bad enough that I know its not a good idea for me to visit Mil while I'm like this - and I am actually glad of it, in a strange way, because it gives me a genuine reason to have a couple of days where I can actually take a break!

Sending {{{{{{{{{{hugs}}}}}}}}}} xxxx

 

[canary]

I dont think its on either RA. I think Id be looking for another CH too.

 

[tigerlady]

Really shocked at the refusal to take people to the loo, Anne - that really isn't on, at all! I get that there are times when staff can be run off their feet, because I've been in that situation when working - someone asking for the loo at meal times, when there are just 6 staff to make sure that 28-30 people get their meal (and several of those people need assisted feeding), losing up to two staff for the 10 minutes or so it can take to enable a toilet visit is difficult - but its one of the things that a carer should never, ever say no to and somehow, it has to be managed. Its non-negociable - or at least, it always has been in my experience. I can fully understand why it would upset you - I would be furious myself.

I understand the tiredness too, hun, and I feel for you You would think that with Mil now not being here 24/7 that I'd have bags of time to recover and feel better, but instead I feel totally wiped out and actually quite low. And its surprising how it cuts into any chance of resting when you have to work your day around visiting - not that you don't want to visit, just that its not as stress-free an experience as you might expect it to be, once you have supposedly stepped back from the 24/7 hands on caring - there is still so much that you have to do and feel responsible for. I've woken with a cold today, not that bad, but bad enough that I know its not a good idea for me to visit Mil while I'm like this - and I am actually glad of it, in a strange way, because it gives me a genuine reason to have a couple of days where I can actually take a break!

Sending {{{{{{{{{{hugs}}}}}}}}}} xxxx

Wow - you just describe what I feel about the tiredness and visiting. I feel guilty when I don't visit my husband, but it is so stressful when I do. I try and tell myself its far less stressful than it would be looking after him 24/7, which in fact I would be incapable of doing, but the visits are so hard. The days I visit nothing else gets done as its half an hour drive each way and I try to spend several hours with him, trying to get him interested in things and trying to make a bit of sense from the strange made up words he is saying. I am an emotional wreck after each visit and so tired I often just fall asleep the minute I sit down, and then I cant sleep at night

 

[Rageddy Anne]

Tigerlady, you've described my days exactly.

Yesterday, standing at the glass door waiting to be let in, I could see my husband, quite respectably dressed, drinking tea and eating cake by himself at a table. He then asked how much he owed, and was told there was no need to pay. He looked puzzled, but by then the carer was busy elsewhere.I'd taken in a flask of tea, and he drank a second mug thirstily, the trolley having moved on.....
As soon as I got in, a male carer that I don't like, immediately told me his electric razor was no good, and my husband's chin had been cut. I'd replaced one electric razor with a newer one only a few days before, and it seemed OK to me, but the carer insisted it should be replaced by disposable razors, saying he'd had to shave Rob himself. After the carer left the room I tried the electric razor and it seemed OK. You need to be gentle, press too hard and the foil dislodges and comes off. My husband changed from a wet shave years ago to an electric razor because a wet shave was too close and caused ingrowing whiskers that became sore. This only happens when that particular carer " helps" him in the mornings.

One POSITIVE thing was that Sunday lunch main course was really good! Small slices of tender roast pork, some stuffing, Yorkshire pudding, gravy, mashed potato, a roast potato, diced parsnips and broccoli. Pudding not so clever, jelly in something like runny cream, quite hard to manage with a spoon; why not a mousse like texture?

And then the dreadful begging me to stay, begging to go home with me, saying he couldn't bear to be without me...he sometimes says he's frightened! (He only says that when the carer I dont like is on duty. .that carer sometimes works, he says, ten 12 hour shifts in succession! Surely that must be exhausting, and no wonder he's impatient.) I told Rob the decorators would be finished and we could move back into the house...breaks my heart to lie but he forgets immediately.

 

[Rageddy Anne]

Comparing Care Homes....

Yesterday I'd been persuaded by a kind friend to go and look at another Care Home she'd been told was very good. We went together.

First thing, parking was very limited. I thought visitors might be put off by this.

The Care Home appeared wonderful, like a good hotel, light and sunny, very smart, warm greeting, a purring cat, fabulous flower filled garden, delightful " cafe", air conditioning if needed........carpets everywhere.....and there was a a hairdressing salon. The rooms were beautiful and spacious, good furniture, residents looked contentedand relaxed.........

We were shown round the garden, most rooms opened onto the garden, with seating available, winding pathways, trees, pergolas smothered in jasmine, and plenty of beautiful flower beds, good enough for Chelsea!

The list of activities and outings was impressive.

The place was divided into wings, each with around 15 beds, and each had a lovely communal area, open plan kitchen, sitting areas and tables and chairs in a dining space. Very homely. We were shown round one of the unoccupied wings where rooms were currently being filled...they needed enough residents in each wing for it to be staffed.

I asked if they took people with Dementia as well as other needs. Yes. Apparently they were mixed, but one wing was specifically for people whose dementia had advanced to the point that they needed extra care.

That wing was locked. The layout was the same. Some residents were sitting peacefully in the sitting area, others must have been in their rooms, but two ladies were walking up and down the main corridor. I was proudly shown a room that was available, very nice, like the others. It was pointed out that this room was particularly nice because it had its own little sitting area outside.. Space for one chair, looking through some railings at a quiet side road, with parked cars. I imagined my husband there, unable to drive now, and, of course, unable to go outside the building unaccompanied, watching the comings and goings. Currently there wasn't a room available with its view into the garden. Every room has a glass door into the garden, but Dementia residents cant go into the garden unaccompanied, so it's Look but can't Go. Nor can they get out of their wing to the delightful communal coffee area, or any of the seating places beyond the Dementia wing. Unless they are with visitors of course. No wonder visitors think it's very nice. It is.

The Care home where he is now is not glamorous. It's for Dementia residents only. It doesn't have a glamorous coffee shop, just a little bar which is rarely manned. The dining room is cramped, and the sitting room barely big enough but there is a pleasant entrance area with a sofa and tables and chairs, where you can watch all the comings and goings.It's garden is plainer, and has only recently been " landscaped" but will be very nice next year. On nice days residents can go in and out of the garden at will, and my husbands room has a door that could be unlocked and does open into the garden. When my husband wakes up he can see several beautiful trees, and the garden -in -the -making.

It was an interesting contrast...the "posh" place was so impressive, but when I thought about how Rob would feel, living there, I think in the less glamorous place he would probably be happier.

Another factor; where he is, residents can stay indefinitely, no matter how difficult they become. At the other place I was given the impression that later difficulties might point to moving elsewhere.

 

[canary]

Whew - for a moment there I thought you were going to say that you were thinking of moving your husband there! I think I agree with you. There were lots of red flags popping up in my mind: a cafe - would he use it?: a private seated area outside as a "bonus" - mum would hate it as she gets anxious when on her own: carpets everywhere - not incontinence friendly: garden you are not allowed into - well, really!:

But the biggest red flag was that it was a mixed residential unit and it seems to me that the dementia residents are neatly tucked out of sight so that they cant make a bad impression on the relatives of the non-dementia residents. Im sure you are right that if they started wandering at night, going into other rooms, moving things around, resisting personal care or any of the other awkward dementia problems they would be asked to leave pronto.

 

[Kjn]

Sounds like a dementia unit home we saw with a separate locked area (emi) .
Least you got to see a different aspect.

Hope you are looking after yourself RA !

K xxx

 

[Rageddy Anne]

Tea...

PThank you Kjn...Still awfully tired and falling asleep every time I sit down. Most of my "team" are away as its holiday time, so I am back and forth to see Rob quite a lot. Self inflicted work is I'm still doing his laundry, which started because he went in with hardly anything labelled... Once things were labelled they started to disappear, so I went back to laundering at home, made a gentle fuss at the Care Home, and retrieved some, but not all his things. I don't like them washing his nice cashmere jumpers every time he wears them even if they're still clean. But that's superficial

More important is my concern about the lack of drinks, and the evident failure to encourage him to go to the toilet. Can't help thinking they withhold drinks so that toilet trips can be avoided.
Our lovely friend visited him yesterday and left him comfortable, then popped over for a coffee with me, and to report and discuss. Not long after, I went to the Care Home, expecting Rob to be calm. So I was surprised to be asked to step inside the managers office( felt like being sent to the headmistress at school!). Rob had, apparently, been acting aggressively on more than one occasion, and had shown a bunched fist to a family member visiting someone else....luckily they understood that it was Dementia behaviour.
The manager wondered if I had any idea why, and said he'd been unusually aggressive and would I mind if an assessment was done, and a urine sample taken.

I said his visitor had left him calm, and I supposed he'd had plenty to drink as it was a hot day and I'd be pleased for him to have a urine test, as I understood what starts urinary infections. I said had there been any trigger, such as a dispute between other residents, or something on TV, pointing out that we'd practically stopped TV at home because sometimes he found things worrying. She said he had been very anxious, and I said I'd seen that before, and it hadn't taken much to trigger it. I also mentioned that there is a full moon, and I wondered if anyone else was unusually troubled!

I took him to his bathroom, and he said he didn't need a wee. I was aware that his underpants needed changing, ( they certainly did) and persuaded him to shower and put on clean clothes. Still no wee. So we set off to find a cup of tea. His neighbour heard me mention tea, and asked if she could have one also. In the place where people gather I asked if there was any chance that Rob could have some tea, and the carer said she was very busy, but give her ten, no, make it fifteen minutes and she'd get some. About ten minutes later a more senior carer asked "All righ?" And I said Rob had been promised some tea. Two other residents said they'd like some,too, so I sat them down and told the carers that now we had four teas on order, and could I help by making them? No, apparently they need to make tea, it wasn't straightforward as some people are diabetic. Ten more minutes passed. Then the senior carer and another smiley carer who usually dispenses tea decided to get the trolley out for tea. The smiley lady said tea shouldn't be a problem, only three people were diabetic and all the carers should know which they were. The senior carer then dispensed sweet biscuits all round without reference to diabetes, and I saw one of the diabetics sneaking half a biscuit.

Rob drank his mug down in seconds flollowed by mine, and then a top up. Soon I took him to his bathroom and he certainly managed a wee. We sat in the garden where it was cooler, then went in for " High Tea". He drank his cordial down, and I topped it up. He drank that down too. So did most of the other residents, so I also topped up their glasses, and most drank all that too. So I topped them up again thinking the carers wouldn't thank me for that. Afterwards, Rob did another long wee, nice and clear. He was still in a difficult mood, and I noticed that so were several others, all saying they weren't sure what they should be doing, and I ended up suggesting they sit down at a table with us, and reassuring them that we'd finished for the day and now it was time to rest. Meanwhile two of the carers were playing music and dancing, to amuse those in the sitting room.

With all my demands for tea, I expect I'm making myself unpopular, but on a hot day like yesterday every one of the residents, at mention of tea, said they would love some!

So, next time I'll have my flask with me again for Rob. But it worries me that I can't feel relaxed about leaving him without visitors.

 

[Jinx]

I am quite shocked reading back on your thread, Anne, about lack of drinks and refusal to take residents to the toilet when asked. I do think it's worth looking at as many EMI homes in your area as you can so you can compare them with where your husband is now. When Bernard was first diagnosed my daughter insisted that we look at the homes in the area, even though there was no intention at the time for him to go into care. She thought it would be helpful for respite needs. I found that there were two places that looked very nice, clean, modern etc. but I discovered that if residents became aggressive or required increased care they had to move out. The home we found eventually, when it became clear I couldn't cope with him at home, was not the swankiest by any means but it was registered as a nursing home and so their policy was to keep residents there till the end.

With regard to fluids, they plied the residents with tea, coffee, juice etc. seven times a day and when visitors arrived they were always offered tea or coffee and one was also brought for the resident as well. I used to visit at various times of the day and only once had a concern for Bernard's welfare when he had been left in a filthy shirt and had been given tablets but no water and he was chewing them but couldn't swallow them. I complained, received an apology from the senior on duty and there were never any further issues.

Jelly and cream did seem to be on the menu there a lot but I think it's an alternative way of getting fluids into people who are reluctant to drink, plus additional calories. Bernard often had two or three helpings!

Hope things work out OK where your husband is now. xxxxxxx




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[Grannie G]

You don`t need me to tell you it`s not good enough Anne.

As it was so difficult for you to find a suitable placement for Rob , you might hesitate to rock the boat in this one but really it is not good enough to fail to provide enough fluids.

It`s also not good enough that you are not being allowed to recover your own strength after your 24/7 caring demands. It sounds as if those demands have hardly reduced.

I`m loathe to make suggestions but one I would make is you request a meeting with the team who are supposed to look after Rob to discuss his best interests and also yours. The home is being paid to care for your husband and it sounds as if you are being relied on to prop that care up. It`s one thing to support the home by visiting regularly for the benefit of your husband, but another if your visits are expected to benefit the care home.

 

[Rageddy Anne]

...and, while I'm sharing my rant, while we were in Rob's room a lady along the corridor was protesting very loudly and distressingly, shrieks of " No no no no no !" which troubled Rob badly. He wanted to know why nobody was going to help her. One of the carers loudly told another one "oh, that's just so and so. Her family had to come in to shower her, as we couldn't get her to"

So that's probably the sort of thing that upsets him. Another man shouts loudly in a very distressed way most of the time, and others can hear. Rob's always been the sort of person who would run to help if some one was calling out, and even now, with all his memory problems, that instinct is still there.

 

[Rageddy Anne]

Thank you GrannieG, your clear thinking is so welcome. I'm not sure just who are the team supposed to see to his best interests. The Care Home has recently asked to change his GP and I don't yet know who that is. So presumably his CPN might now be a different one, not that the previous one ever did much! We've never had a social worker or anything similar, as we were self funding and I was told no help was available and to ask the charities. The only help we had was a lovely lady from the Alzheimer's Association, who has recently left. Unfortunately, I only have finance Power if Attorney, not health and welfare.

 

[nae sporran]

Sad to read of your experience Anne, and Rob's. Like you say, not drinking enough can lead to UTIs as well as making you more confused. Though, it can also make you go to the toilet more often. I know that because of my own bladder problems, when it gets concentrated it irritates and comes out in short stages. ( Probably too graphic.) Best wishes to you both.

 

[Kjn]

Oh the drinks thing. My dad was in hospital a week, not once did we see anyone give him a drink, his warm jug of water well out of reach, we could see he was dehydrated. After a week they did some routine blood tests , only done on a Monday dr informed us dad appeared dehydrated, ...no really !? He didn't come in dehydrated as such a tea drinker so whys that?
Asked us to keep his fluids up
Brother got us onto juice in those sachets with straw, dad is bombing through them and is hydrated again and the ward he is in now are recording constantly his fluid levels.
Just shows not just a care home ...even a rehab hospital seems completely oblivious re fluids .

Also my dads diabetic but can't stop him scoffing biscuits wherever he sees them.

I hope you get some family help soon , you can't do it all yourself. Mum is visiting the hospital daily which concerns me as she isn't resting properly either.

((Hugs))
Xx

 

[Grannie G]

I only had the old EPA Anne which didn`t cover health and welfare but as next of Kin I was consulted at all levels and let it be known I expected to be.

The team caring for your husband will include any staff in the home responsible for his care, he should have a key worker , and his CPN or a member of the mental health team.

When the home changed my husband`s GP,to one local to the home, I arranged an appointment to visit him and introduce myself. I told the GP I wanted to be consulted on all levels of my husband`s care. He was unable to speak for himself and would trust me to speak for him.

When we had a best interests meeting both our son and I were invited and our opinion sought.

I understand you may not have the strength to be push just now but let it be known to the home what you expect. Drip feed them so they learn to know you in small doses.

 

[Rageddy Anne]

Drip feed...what sensible advice! It's a case of picking your battles isn't it? I'll find some of Kjn's sachets,and continue to take a flask of tea..(.still not enough), and tell all his visitors to make sure he drinks.

Good idea to find out who the new GP is, and visit...thank you....

 

[Kjn]

They're Capri sun RA , we get no sugar for diabetic dad but there are others.

 

[Jinx]

Anne, You might want to consider getting in touch with the Care Quality Commission (CQC). They are there to regulate and inspect all care homes and you can complain anonymously if you prefer. You may feel it's a step too far but here's the link http://www.cqc.org.uk/node/2112 in case you want to check it out. xxxxx


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