The start of a new week - give me strength

[Helen33]

Since the decline last week there have been many differences. Last night the toilet was flooded with urine, walls, floor, windowsill, everywhere. This morning Alan had no idea how to do up his shoe laces. The shoe lace thing is a first.

Anyway I started the morning really well. I decided to make the most of everything because there's not much I can do about a disease that is progressive. There are still plenty of good things so to make the most of them.

THEN THE REALITY HITS

The sitter arrives and he's not been informed that there has been a change of plan and that he will be taking Alan to the care home and spending the time with him there. He doesn't even know where it is. I have 10 minutes in which to explain the whole situation to him, give him directions and pack Alan in the car with all his things. Alan has his photos, guitar and some paintings he's done in an album. I then have about 3 minutes before my client arrives.

I have a morning working with no fear of interruptions.

As soon as the sitter arrives back with Alan I can tell from the sitter's body language that he has had a tough time. I immediately feel a bit annoyed at him so clearly showing me how tough it has been for him because I am dealing with how tough it is 24/7 and Alan must be finding it even tougher!! Anyway the sitter tells me that when they arrive at the home, no one knows who he is and no one knows who Alan is!! It takes a very long time to sort it out and by this time Alan is very agitated and distressed. There is much confusion about the room which Alan was supposed to use and this too caused agitation and more distress, Eventually they settle in a quiet lounge and three tea ladies descend upon Alan full of enthusiasm and the sitter tells me that he sees how distressing this is to Alan. By now so much language must have been used in front of Alan that he is distressed up to the hilt!! The sitter is a very quiet man and did not intervene and look after Alan's best interest. When the tea ladies eventually left, Alan had totally gone into himself. The sitter relayed all this to me and didn't recognise that I would be thinking that it was his job to care for Alan's needs. Eventually the sitter decides to take Alan in the car out of the situation and they do a walk around a local park. He said that Alan then became like his usual self.

By now I am stressed and realise I have just been handed a big mess that needs sorting out. I put Alan in the car and go to visit the home. I ask to speak to the woman that eventually dealt with it this morning and she doesn't seem very friendly. The manager and all the staff last week seemed very friendly but this one looked annoyed. Anyway she said that when she looked in Alan seemed fine and I had to tell her that actually he wasn't. I asked if she would please ensure that the staff tomorrow evening know that Alan and his sitter will be coming and that the manager gets a message to contact me so that I can iron out a few nitty gritty things as this was all so rushed. She didn't seem happy about doing it but said she would put it in the manager's book.
When I explained to her about Alan having FTD and the effect of three ladies all talking to him at the same time, she said "he'll get used to it". I just looked at her and said "Actually he won't - his speech and language is severely affected and having three people all talking to him at once is something that he won't get used to". I was horrified that she didn't understand as it is a specialist dementia place - a place of excellence I understood.

I then come home and have to contact Crossroads Care about the changed situation. Alan has experienced a decline and therefore his needs have very much changed overnight. He needs help with sequencing which can involve toileting, laces, trousers - everything. Not all the time but someone to be available to him when he does need help.

I mentioned to Crossroads Care manager that I didn't want Alan to lose some abilities prematurely and that it was important that the sitters encourage Alan to continue his activities at the care home - or other activities. This includes going out for a good walk. I automatically expect people to see things as I see them and I now realise that they don't and that I seem to have to work hard for them to understand what I see. I know that Alan enjoys walking and we have lovely parks near where we live. I think it is better that he is still able to have these walks (as he would if he had sitters at home) rather than just sit in a care home lounge. When it is not possible to go for a walk that Alan be encouraged to have the space to discover what it is that he would like to do rather than them thinking that because he is in a care home that it is ok to just sit and drink tea!!

Crossroads Care are coming to see me on Thursday to do another assessment. I have a distinct feeling that the problems are that no one, apart from the Speech and Language Therapist and perhaps the CPN, understand that a Semantic Dementia of the Fronto Temperal Lobe is different to Alzheimers. I have a sneaky feeling that the training for dealing with Alzheimers is automatically translated into being right for FTD and I don't think it is. I am perfectly prepared to be corrected on this.

 

[Grannie G]

So many changes Helen, and all so unexpected and rapid.

First the changes in Alan. Some have come gradually but the inability to sequence, his difficulties toileting , are new and sudden.

And after the promises of yesterday came the letdown, when nothing went to plan.

We can only rely 100% on ourselves. We are mistaken to think others , who we rely on for support with caring, feel the same, act the same or believe in the same.

I don`t know how much carers are paid but I do know it`s peanuts. From these people we expect the highest standards when we entrust those we love , who are so vulnerable, into their care. Because professional caring is a business rather than a service, the priority is profit. Employing low paid workers increases profits. And as long as this is considered acceptable, the standard will be below our expectations.

You are having to struggle for high standards for Alan, Helen. Few would have the confidence, the wherewithal and the stamina.
But you should not have to.

Love xx

 

[milly123]

hello helen and sylvia sounds like things are changeing for both of you i do agree about careres they arnt well paid but should know more about the job i dont think they get enough training i found poeple who had worked in a nursing home coped better than someone who hadnt thinking of you both in these dificult times milly

 

[nellbelles]

Helen

You are having to struggle for high standards for Alan, Helen. Few would have the confidence, the wherewithal and the stamina.

When I read this, I thought yes this is what we all do, We see through the AD, to the person that is trapped somewhere inside the fog.

We do not take kindly to someone dismissing the fears of someone who cannot deal with the world as they used to.

Whatever paid carers are just that..paid to care.. and if they cannot do that, they should quit..

When I was in hospital the evening carer had nothing to do but see Tom took his tablets (this is 2 years ago) but bless him, he would make a cup of tea and sit and chat..His view he was paid for 30minutes so he stayed for 30 minutes.

So a person in a job has to expect to do that job, even if it doesn't go according to plan

Well done, Helen kept fighting lady.

 

[Bookworm]

Just posted & it disappeared - I posted about marvelling at your strength and resilience and compassion and creativity and I posted to say i hope Alan will be a little more able tomorrow and that i hope that local people will soon come and give real support - not support that you have to orchestrate, xoxo

 

[Trying my best]

Hi Helen, I really sympathise with your situation. It is so wrong that carers have to push so hard to get services that are even close to what our loved ones need. It really is a case of "the squeakiest wheel gets the most grease". Many people, I am certain, no longer have the strength or the assertiveness to continually push for the changes that are needed. But you sound determined, and tenacious, and I am sure you will succeed. Good luck!

 

[Helen33]

Thank you for your kind messages of support.

"the squeakiest wheel gets the most grease".

I've never heard this before and it made me laugh out loud. I have sent an email to the Crossroads Care Manager outlining the current situation and what I see as the requirements to best meet these changed circumstances in order to give Alan the most positive experience(s) possible. He is reliant upon 'experience' because he cannot reply upon 'understanding' which comes with speech and language. The care manager has said that it was helpful and she will make sure that all the sitters have a copy and are brought up to date with the changed situation. Sitters are being swapped and changed to meet these new challenges in the best possible way. I am delighted.