The "unhelpful, well-meaning others". Have you had them? How did/do you handle?

[Benrese]

Hello to all,

I hope you are finding a peaceful and hopeful spot on this weekend.

I was wondering, are there any of you who would like to share their experience in regarding to those people who seem to pop up at the worst possible times, bringing with them opposition and disbelief as to your dear one's memory loss issues?

My husband, sister-in-law and I have been faced with a few difficult/awkward moments over the last two difficult weeks.

My step-mum-in-law (SMIL) is quickly going downhill with what we think is Vascular dementia. Her husband, Dad, is in the hospital and has been for 2 weeks now. She also was in hospital, as she went there via A&E due to gallbladder. She went without telling anyone and Dad ended up having a fall, after being left for 2 days with no food or water. You see, SMIL forgot to phone Dad, or anyone at all-and she is his main carer.

Now, SMIL has been released from hospital, but poor Dad still struggles to get back on his feet. All of us (hubby, sister in-law and myself) are getting many calls from SMIL who keeps forgetting Dad is in hospital. She gets in a panic and calls and is stunned each time.

In all this confusion and stress, some of SMIL's neighbours and old friends have shown up to either visit her or Dad whilst they were in hospital and then to visit SMIL when she got home.

We've now had a few different conversations/phone calls with SMIL's friends. One of them was very stern with us and told us that it was NOT that SMIL had any memory issues, it was how we all were explaining things to her. Apparently this friend thought we were trying to confuse SMIL.

Another friend actually helped SMIL go and find the car she misplaced (she should NOT be driving), then called us and told us we need to stop confusing SMIL and let her drive and get on with her life. We tried to explain things to these people, but there was no way they were believing us.

By the end of the week, the three of us just sat down and had a tearful cuppa and cry. Here we have spent 2 weeks running all over the place, cleaning their large house from top to bottom (it was horribly unsanitary as they have a dog who is also facing her own issues and is incontinent) the carpets and floors were covered in flith.

We scrubbed and got all their laundry and took it home to do it. We couldn't believe the state of it all.


You should have seen the three of us, covered in dirt, sweating, exhausted and in comes one of SMIL's friends and says "Well, I think you should try and explain things better to SMIL, then there won't be any problems". Just as she left, the phone rang and it was SMIL, still in hospital, hysterical ...asking us where Dad was. Well, she had JUST been down to see him in his room that morning.

We also have the non-communicative GP, telling us we need to mind our own business. All of this, whilst we watch Dad with Parkinson's decline and SMIL spin out of control.

At the end, we all really didn't have much we could say to those people. I guess they don't see all the deterioration (though one must wonder how they can miss it?, or maybe they are also in denial?

I guess I needed to sit down and have a vent. More than anything, I would very much love to get them both into their home, make sure they had lovely warm baths, nice food and all the safety and love they could tolerate. But this story is not going to end this way.

Instead, the Manchester Professor will end up in a Care Home and his lovely wife who was a teacher for decades, will be wandering the house, until she becomes sectioned.

We are working on POA, but of course-we are now in a very tricky situation.

Thanks for the ear and would love to hear your own experiences.

Sorry if I've gone on!

Cheers,

 

[Grannie G]

Sadly it happens some people have to demonstrate they are at risk before family is believed.

I fell out with my sister, who thought she knew so much better than I did, even though she lived 300 miles away.

I showed a CPN [ community psychiatric nurse ] the door when she took no notice of my wishes and was very intrusive on the first visit.

I became housebound until I was able to get help on my terms only.

It`s a tough ride and I`m afraid we have to be quite assertive once we realise what help we need.

 

[Mibs]

Hi Benrese - I read your post and was overwhelmed by the situation you find yourselves in.
When my husband was diagnosed with AD, I innocently thought that it was up to me to care for him and soon started receiving the kind of 'advice' you describe.

Particularly upsetting was the suggestion that I was narrowing his options by concentrating on the disease, and discouraging him from 'continuing to live his life his way'.

My suggestion to one well-meaning friend was that he spend the afternoon with us and stay for tea. It was obviously a few hours he's not willing to repeat, as I've not seen or heard from him since !!

So that would be my suggestion - ask everyone who ventures their opinion if they can help you (try to sound sincere) and bypass the doctor - get assessments done by social services.

The bottom line is that you're damned either way - you can only do your best, and that will be some comfort to you in the long dark days ahead.

My best wishes to you and your family
Mxx

 

[lin1]

Sylvia I must have had your CPNs brother , I think he must have got he message as he never came back, It was possibly the tone of my voice before I slammed the door .

I once told a GP that he " didn't have a clue"well he didn't, I have no idea why he got upset after a chat with the practice they never sent him out to mum again .

Their are times when we have to be assertive with the professionals, so never be afraid to say, "no not possible ".

I particularly love this from Mibs My suggestion to one well-meaning friend was that he spend the afternoon with us and stay for tea. It was obviously a few hours he's not willing to repeat, as I've not seen or heard from him since !!

So that would be my suggestion - ask everyone who ventures their opinion if they can help you (try to sound sincere)
Only if you trust them ,While they were there perhaps say you need to get, do something urgently and would they mind staying with mum for maybe an hour and get out sharpish before they can say "er no"

I would routinely see another GP at the practice or change to another practice,

 

[1954]

My MIL's deceased boyfriends daughter (if you can work that one out) has never believed MIL has dementia. She and her hubby came and took MIL out for a meal and declared there was nothing wrong with her and we must be having her live with us for financial gain

We did think shall we let MIL go and stay with them for Christmas last year and then they would DEFINITELY know that MIL has dementia but we decided it would not be in MIL best interests (they live North London we live SE London). The family would not know about her medications or medical conditions if she had to go in to hospital say post seizure and MIL thinks she is not on medication and is perfectly health. We also thought of the incontinence and utter confusion it would make for MIL etc etc

Most of those who don't believe there is anything wrong with her have thankfully fallen away from her and of course MIL thinks there is no phone in our house and never mentions about speaking to them

 

[RedLou]

Remember this...

I have encountered similar. For example, I told my dad he was risking ending up in a long-stay ward or a dementia ward if he stayed in the country he retired to. I urged him to return to England. But then he spoke to an acquaintance of his, whose response was a hearty: "Oh, you won't end up in a long-stay ward!" Naturally, he chose to believe her.
He is currently, miserably, in a long-stay ward, complaining to me - he seems to think I can wave a magic wand to extract him - and the said acquaintance has never visited him. Not once.
What you have to remember is that these people are not interfering because they care. They are reassuring the dementia-sufferer because it's embarrassing for them to be faced with someone on such an emotional precipice and it's easier to pretend it's not happening. They are waving it away and blaming the family for their own discomfort. Ignore them. Or give them a piece of your mind. I forcibly stood up to my father's guilt-tripping vicar and he backed down faster than Usain Bolt with a following wind.
But yes, the 'well-meaning' but specious advice does get wearing at times.

 

[Sue J]

I became housebound until I was able to get help on my terms only.

It`s a tough ride and I`m afraid we have to be quite assertive once we realise what help we need

Thank you for writing this Sylvia as it makes me feel stronger when I get 'stroppy' because I want things on my terms, I am not being unreasonable as many seem to think I am, but understanding what is necessary. Improvements have only come about because I wouldn't compromise on what I needed, I still wont - if that makes it difficult for others then I am afraid that is how it is.

 

[jeany123]

Thank you for writing this Sylvia as it makes me feel stronger when I get 'stroppy' because I want things on my terms, I am not being unreasonable as many seem to think I am, but understanding what is necessary. Improvements have only come about because I wouldn't compromise on what I needed, I still wont - if that makes it difficult for others then I am afraid that is how it is.

Have you noticed the looks we get when we refuse or say something would be no good and try to suggest what would be useful, they look as though we don't know what we are talking about, They are bemused when it turns out that we are right

 

[Sue J]

Have you noticed the looks we get when we refuse or say something would be no good and try to suggest what would be useful, they look as though we don't know what we are talking about, They are bemused when it turns out that we are right

Exactly Jeany, because they are the 'experts', I don't know what that makes us.

I don't understand why a 'dilemma' whatever it is cannot just be discussed and attempts made to cope/deal/manage it and then review if it has worked or not. So much time and resources are wasted because services are rigid in their attitude and there is no flexibility according to the patient's needs and with dementia there has to be great flexibility in my view.

 

[Onlyme]

My particular favourite us people who visit once a year and tell you that the relative can't have dementia as they had such a lovely visit with them and they seemed so 'normal'.

They missed that they were never called by name as the relative had no idea who they were, what they were there for or that they had been 10 minutes after they had left.

 

[1954]

EXACTLY I know the feeling well. Well put!

 

[Benrese]

Thank you all, so very much-for your experiences and support.

I woke this morning, knowing we would be making our way to hospital to see Dad later this afternoon. I had a pit in my stomach, something heavy.

I then made my way back to the forum to have a read and saw all your posts. I cannot tell you how much comfort they gave me. I shared them with my husband and he brightened as well.

We had received a late phone call last night from sister-in-law, apparently SMIL once again could not recall where dad was. She was nearly hysterical telling us she'd been everywhere in the house looking for him and even went for a walk round the block. Sister reminded her that he has been in hospital for over 2 weeks now and is being well taken care of and all will be OK. Once she called down, she said "Oh yes, that's right-I went to see him this morning" (she hadn't). I guess her poor brain is trying to finish the blanks to the stories in her head.

One day, in bite sized pieces..you are all so right. And just knowing we're not alone in this makes the long road more bearable.

We hope to have a conference with the social care team (Dad's) sometime this week.

Thanks again!!

Cheers,

 

[Witzend]

I think a lot of it happens because people honestly don't have a clue - they don't understand a tenth of the issues. They assume - as I will admit we did when we were very new to it all - that if you explain things simply and clearly enough, the person will understand - and cooperate. They simply cannot get it into their heads e.g. that people CANNOT remember anything, let alone issues like aggression or nastiness. Or that sufferers can come across as 'perfectly OK' for short periods, even when those closest know that they could not possibly manage without loads of support.

I had loads of flak -all behind my back - from FIL"s younger sister when we finally decided on a care home. I was selfish and self centred. She insisted on a CH near her - SHE would be happy to see him often. In the end the only one we found that would do happened to be very close to her flat. And of course FIL was then over at her place every day at teatime, and before even a couple of weeks had passed she was on the phone saying, 'I can't cope! He's driving me mad! I can't watch Countdown!' etc. And I said, 'Well, maybe now you have some idea of what it was like for me, ALL day, every day.' She never apologised for all the flak, but at least I never heard of any more accusations of what a selfish, uncaring baggage I was.

Given my time over again, I would say to any clueless person giving me 'advice', 'You come and take over for a fortnight, on your own, no time off, and then maybe I'll listen. Until then, please accept that you cannot possibly understand the realities.'

But I often think that nobody ever does - and I include the professionals in that - until they are forced to learn the hard way.