Like a Hyperactive toddler...

[Rageddy Anne]

The new home sounds so much better Anne - I'm so glad x

We also experience very 'up and down' visits with Mil, and it is hard to cope with, so I feel for you, Hun. No two visits are the same, and even now, after nearly 5 months, we often leave saddened by how anxious, agitated and unsettled Mil is. But, its as you say - we have had to realise and accept that it wouldn't make any difference where she is. At this point in her illness, it simply isn't possible for her to be happy or settled anywhere. She doesn't - thankfully - have the level of awareness that Rob has, anymore, but the constant delusions are so often paranoid or scary, that until they ease, her anxiety and agitation will remain high.

So at the moment, we have to take comfort in the fact that the CH staff can cope with caring for her, in a way that had become impossible here at home - and that they do so with a lot of thought and very real affection for her. They really try to ease her upset, and even if they don't (can't) always succeed in calming her, there's a lot of comfort to be had from the fact that they try so hard. I know its still very early days for Rob and you, with the new CH, but I hope as the staff get to know him better and learn his ways, that you will be able to take comfort from at least the same, Anne - because it does help xxxx

I hope the visit goes well today xxxx

THANKYOU Ann, for finding time to write here. It's been a busy time. Making sure Rob settles in has kept me with him a lot of the time, and I'm afraid I haven't had time to visit your thread for a while. I've found so much on there that's helped me understand, and I honestly think it would make a really good and helpful book one day...

One thing that's struck me is how similar your MIL's experience of dementia is to my husband's. Some other people I know whose partners also have Dementia don't seem to encounter the complexities that you and I have, the intensity of the delusions, and the energy with which those delusions are pursued....

My little bit of research/discovery is the mystery of wanting to GO HOME. It crops up again and again, doesn't it? That's why I've agreed to Rob coming home today for tea with some very caring friends whom he trusts. If he becomes agitated they will take him back to his Care Home, and I will drive there too, pretending I also live there, which is the strategy that seems to work best....That was a suggestion from someone on this Forum, and it also works well for us.

And depending on how Rob is when he is actually at home, perhaps that will contribute just a little towards the mystery of WANTING TO GO HOME.

A couple of years ago his brother actually took him to the house where they grew up, and the resident who moved in after them kindly allowed them to go into the back garden, where they had spent many hours feeding chickens, having tea, picking berries, cutting runner beans etc. He didn't recognise it at all, and that was when he was constantly begging to GO HOME.

I often think of your mother in law, and how hard you tried. There does come a time when you just know that a person's needs are such that they really need a team of understanding people who are less exhausted than family.... I hope you are feeling better....when there's some time I'll catch up with your thread again...sending a hug, and another big THANKYOU...

 

[Ann Mac]

I've also often thought that there are so many similarities between Rob and Mil, when it comes to the persisitence and prevalence of the delusions, Anne -I have seen others write of their loved ones having similar delusions - outside of the sundowning, which I think brings a similar level of agitation to all who suffer through it - but it does seem to be a major feature for a few, rather than all. You, and others who have also had to deal with the extreme of delusions, sharing your experiences has helped me more than anything else. Its not a case of wishing misery on anyone else - butit really helps to read of experience and advice from others that have faced similar issues xxxx

.

My little bit of research/discovery is the mystery of wanting to GO HOME. It crops up again and again, doesn't it? That's why I've agreed to Rob coming home today for tea with some very caring friends whom he trusts. If he becomes agitated they will take him back to his Care Home, and I will drive there too, pretending I also live there, which is the strategy that seems to work best....That was a suggestion from someone on this Forum, and it also works well for us.

And depending on how Rob is when he is actually at home, perhaps that will contribute just a little towards the mystery of WANTING TO GO HOME.

A couple of years ago his brother actually took him to the house where they grew up, and the resident who moved in after them kindly allowed them to go into the back garden, where they had spent many hours feeding chickens, having tea, picking berries, cutting runner beans etc. He didn't recognise it at all, and that was when he was constantly begging to GO HOME.

I think the situation with 'home' would be the same with Mil, Anne. I'm not 100% sure that she would even recognise the two addresses that she usually refers to as 'home' - where she grew up in Limerick, or where she lived for over 40 years in Wales. At times, she has even insisted that the 'home' she is talking about going to is located in a place where she had never lived - she has sometimes insisted that 'home' is 'her' flat at the seaside, or a house in London, or in Birmingham, or Runcorn, or our local town here.

I've sometimes wondered why, if the desire for 'home' is actually a cry for security and for things to be as they were, she and others ask for a place far more often than they ask for a person? Mil always said (as many I'm sure feel) that her home was wherever her husband and son were - as long as they were there, she would say that anywhere would be home for her. So I would think that they would represent her 'security' far more than a place, in her head. But though she does ask for the 'important' people, her late husband and her son, and her parents too - she doesn't cry for them as much as she cries for 'home'. I find that so odd.

Do let us know how the visit goes - I'm hoping that it is something that both you and Rob are able to enjoy xxxx

 

[Rageddy Anne]

Home for tea....

Rob coming home today for tea was a resounding success! A wonderful friend brought him in her car, and he arrived with a smile, was pleased to see me though I tried to be casual and not hostessy. She had told him, casually, that they were coming for tea with me, and she said he told her when to turn into our road, and which gate to drive through!

We had tea in the conservatory and moved briefly into the garden, but he thought he was cold, so we popped back inside. He smiled happily, drank his tea, took his tablet which she had brought from the Care Home, and enjoyed scones, sandwiches and cake, all without fuss, albeit I rescued crusts etc for the birds. When he needed the loo in a hurry I was ready with a little plastic bucket, and that went well too.

There are some nice photos but I can't seem to get one to show here...which is a pity as he looks so happy and relaxed.

The strange thing is that he seemed so comfortable, and not a bit upset. So I don't think "Going home" is anything to do with a place, but must be more related to turning the clock back to a time before confusion set in.

When they left, he was perfectly happy to get into her car, and I said I'd see them later after I'd posted a letter....

I didn't wave or go back inside, simply disappeared out of sight behind the house before they left.

 

[Izzy]

How wonderful Anne. I have a lump in my throat just reading that.

I think you're right about going home being related to a time which they hope will be more comforting for them. That's how it always felt with my mum. Bill never really did that.

Well done!

 

[Rageddy Anne]

Going home, a place or a time? Or a person?

Interesting AnnMac, your thoughts about asking for home rather than a person.

We moved many times before settling here about twenty years ago, but Rob has now been back to the home where he grew up, and back to this house, probably the only places he would have thought of as home. He didn't pay any attention to either.

His sister, in Canada, asks for her Mum constantly. Sadly, their mum died soon after Rob's sister moved to Canada. She married in Canada, had a family and stayed. I think she has missed her Mum for most of her life. She often tries to tell her daughter who lives near her Care home that she loves her, and is thrilled when her other daughter who lives far away, visits.

We were in Canada when their mum died, but came back to the UK after three years, with Rob's job. Rob asks for me by name a lot at his Care Home. We pretend as far as we can, that I live there too, or close by, and will be back soon. It seems to work.

Rob seems to know me, and I'm the only person he still addresses by name. He often tells me he loves me.

So, in my experience, I'd say the memory of a person or persons, rather than a place remains longer .

Rob lived on his own with me, whereas your MIL lived in your family, which seems to have thrown her regarding relationships...so there's another big question for future research. How I wish I was clever and could live a hundred years!

 

[Rageddy Anne]

How wonderful Anne. I have a lump in my throat just reading that.

I think you're right about going home being related to a time which they hope will be more comforting for them. That's how it always felt with my mum. Bill never really did that.

Well done!

You were everything to Bill, and you were always there for him, Izzy, which was wonderful...
Perhaps some people in the later stages are more attached to a particular person, such as a husband or wife, while others are less attached and are longing more for a place or a time of comfort.

 

[Izzy]

Oh thank you Anne - another lump in my throat!

I think their dementias made things different too. Bill had Alzheimer's and Mum had Vascular.

 

[Rageddy Anne]

Had a bit of a blip yesterday because the Care Home had a jolly Easter tea party with bonnets and a sing song with visiting singers and it was all too loud and busy for Rob, so when I arrived with a friend he had a melt down wanting me to "GET me out of here". I think that's something like the wanting to go home question, but he was so sure I should do something that he started pushing me and making a fist...Poor old lad, it must be so frustrating for him, but the sensible thing was for the wonderful carers there to distract him. The owner of the Care Home is also very hands on, and he distracted Rob in Rob's room with quiet talk about the things Rob used to do. Later on the nurse rang me to reassure me that he was calm and restful again. I think we've moved Rob to a much better place, and they even seem to care about me, instead of treating me like an extra Carer.

 

[Grannie G]

These celebrations of festivals can cause an increased confusion in many people with dementia. I once questioned this practice in my mother`s home and was told celebrations are held more to comply with the expectations of families than the residents.

It sounds as if Rob is now in a really good place Anne, It must be such a relief for you.

 

[nae sporran]

Sad that Rob was so upset by the party Anne. It was such a lovely caring gesture of the CH manager to look after him and to call you later.

 

[Rageddy Anne]

Sad that Rob was so upset by the party Anne. It was such a lovely caring gesture of the CH manager to look after him and to call you later.

THANKYOU Rob. He's OK again now the party is over.

 

[Rageddy Anne]

Two different visitors...

Two days ago I visited Rob with a visiting relative who's understanding of Dementia is the old fashioned one, and unfortunately Rob was having a " full moon" day, so he was full of indignation. The result was that our visit didn't last long as we weren't doing anything to help him.

Next day I went with a dear friend, who instinctively spoke slowly and clearly to Rob, about things he could relate to, shared experiences from the past when he made us laugh for instance. In no time she had him smiling and laughing.

What a difference!

 

[Rageddy Anne]

Itchy skin

Poor old lad, Rob's being driven mad by itchy skin. The nurse made a token phone call to the GP.and was told by the receptionist the doctor would return the call, but nothing happened, and then it was Bank Holiday.

I got two different creams to try, but he can't even bear them being applied, and has been refusing to shower.

I think it's a physical result of the stress he's suffering from his dementia...Psoriasis perhaps? Over the weekend he was clearly saying he wanted to kill himself, wanting me to help him, and planning ways and means. He also wanted to kill me first, at which point I felt it best to leave the room.

If the GP prescribes enough tranquillisers to subdue him he will lose the few abilities he has left, something that happened at his last Care Home, (where they weren't even updating it on their computer record.)

Will try again today, with Aloe Vera gel. At least I know at this place he won't just be left without someone comforting him.

 

[LadyA]

Anne, my mum has suffered severe psoriassis all her life, and last year ended up being admitted to hospital through A&E, it was so bad. It was overcoming her immune system. She spent a week in hospital being smothered three times a day, neck to toe, in goo! Mostly paraffin gel, in a thick layer. Heavy duty moisture is absolutely key to keeping that at bay. They did use steroid cream as well, under the gel, but the moisture was the thing. She now keeps up the moisturising, twice a day. Doesn't need to be quite as intense, but it needs to be done.

For the itching (would it be something like prickly heat?) you could try, if the aloe doesn't work, brushing on plain cornflour. It's very soothing.

 

[Rageddy Anne]

Thank you, Lady A. I'll get cornflour straight away...

 

[Grannie G]

Oh dear!

Do you think Rob may be too warm? The homes keep high temperatures going for those who are frail and immobile. Is there enough ventilation ?

I hope the cornflour works.

I was prescribed anti histamine for a reaction to an insect bite which caused uncontrollable itching.

 

[jugglingmum]

Calamine lotion? I think it is zinc oxide which is the ingredient which soothes (same as sudocreme)

 

[Rageddy Anne]

I've taken Eurax in, and two other creams; the Eurax seemed to give him a little relief yesterday, and the doctor will speak with the nurse tomorrow. When I arrived I found the male owner sitting with Rob in Rob's room with some paperwork on his knee but also casually chatting, and Rob was quite relaxed and not scratching.

After a few hours he was scratching again, and getting agitated, and I found he was badly constipated. After sorting that I hoped he'd feel better, but he got more agitated, until one of the carers helped him with his night time rituals. I crept away leaving him in one of the sitting rooms in his dressing gown.

Unusually for a care home, they actually open windows in the dining and sitting rooms, and don't overheat, GrannyG, so I don't think Rob can be overheated. One Carer wondered if he could be allergic to the material of the pull-ups.....
As an experiment, I wore some two days in succession; they weren't very nice and I wouldn't like to be wearing them all the time. Some carers put his underpants over the pullups, so he's quite tightly restricted....I wonder, is that usual?

 

[Bunpoots]

I once had a severe allergic reaction to a new washing powder. I was covered from head to toe in a red itchy rash. It took steroids to subdue it in the end. Has anything been changed? Bubble bath, soap, washing powder etc?


Sent from my iPad using Talking Point

 

[Rageddy Anne]

I once had a severe allergic reaction to a new washing powder. I was covered from head to toe in a red itchy rash. It took steroids to subdue it in the end. Has anything been changed? Bubble bath, soap, washing powder etc?


Sent from my iPad using Talking Point

Must've been awful Bunpoots. We've been thinking of everything, the washing powder they use is for sensitive skin, and so was ours at home. He only started the skin irritation a few weeks before leaving the previous Care Home.Perhaps all Care Homes use sensitive skin washing powder; they should, I think.

The previous Care Home gave Christmas presents of cheap shower cream, soap, shampoo etc, which I quickly replaced with what he was used to. I was suspicious that might have triggered it, but that was a while ago, and now everything he has is for sensitive skin.

Several people have suggested an allergy to pullups, which I started supplying a few months ago at the previous place, when the pads that are inserted into underpants kept appearing in strange places, like falling out of his trouser legs during lunch!!!A continence nurse apparently has seen him today and he's being supplied with a different kind of incontinence pant from the ones I've been supplying from supermarkets. No one has asked me to pay...yet.

I suspect his skin problem is related to his high anxiety, having read that stress can cause things like Psoriasis. The Care Home nurse prefers not to give tranquillisers, but he must be a challenge to the carers...NONE OF THIS HAPPENED IN HIS PREVIOUS CARE HOME. WHAT A DIFFERENCE!