Is this common

[Scarlett123]

My OH put on his charming self when we visited the Condultant and therefore his report said that he didn't seem to have any behaviour problems. Why don't the consultants take a few minutes with the carer on their own to ask questions so that they get a better understanding of how things really are. You can't chip in and say much infront of the OH?

I typed a statement "To Whom It May Concern", which I updated regularly, giving this to whichever "professional" we saw, prior to our appointment. I'd just hand it in to reception, and ask if this could be given to Dr X.

That way you can tell it as life really is, without upsetting your OH. John would refute everything I said, if I spoke in front of him, and it would lead to arguments after the visit, and this way you can avoid all that.

If someone was visiting us at home, I would ask John to help me make the coffee, give the professional a copy of the Statement, and John could be trusted to arrange a dozen biscuits on a plate, whilst I made the drinks. I'd spin this out, so that the visitor had plenty of time to read everything. Hope this helps xxx

 

[Trisha4]

After a while, you'll find you can lie with ease. Another friend, who again we saw once in a blue moon, told me that I should speak to John s-l-o-w-l-y and clearly. Wow! I'd never have thought of that myself! Instead of finding a sharp knife and stabbing her, I said "What a wonderful idea! I must try to remember that!"

Scarlett, you're wonderful. This actually made me chuckle although I appreciate it isn't a laughing matter!


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[Scarlett123]

Scarlett, you're wonderful. This actually made me chuckle although I appreciate it isn't a laughing matter!


Sent from my iPad using Talking Point

I'm so glad I made you chuckle! A chuckle a day is good medicine.

 

[Jean1234]

I typed a statement "To Whom It May Concern", which I updated regularly, giving this to whichever "professional" we saw, prior to our appointment. I'd just hand it in to reception, and ask if this could be given to Dr X.

That way you can tell it as life really is, without upsetting your OH. John would refute everything I said, if I spoke in front of him, and it would lead to arguments after the visit, and this way you can avoid all that.

If someone was visiting us at home, I would ask John to help me make the coffee, give the professional a copy of the Statement, and John could be trusted to arrange a dozen biscuits on a plate, whilst I made the drinks. I'd spin this out, so that the visitor had plenty of time to read everything. Hope this helps xxx

Thank you. What a good idea. Will certainly do this before our next check up.

 

[Scarlett123]

Thank you. What a good idea. Will certainly do this before our next check up.

After a while, you find the things that work for you, and make life so much easier. When our loved ones are seen by an "expert", the visit may only last for 10 minutes, and is only a snapshot of that very short period of time.

I'd make sure the Statement had plenty of paragraphs, so it was easy to read, and the recipient was delighted, because it saved them writing notes.

 

[AlexEJ]

Hi there, unfortunately this has happened to me too. My mum has had Alzheimer's for years and it has been relatively stable until about 12 months ago. In the months since September there has been a rapid decline in her. She has now gone into a home as my dad is not able to cope any longer (I live 3hrs away with a young family, otherwise I'd have stepped in to help more) anyway, people have been very quick to judge our extremely difficult decision regarding mums health and care. It's not something we took lightly and it is heart breaking, but people who saw mum for an hour once a week, I believe didn't see the real truth of her illness. I stayed for weekends regularly and witnessed it first hand.
Only the people who have cared for, or been very close to the suffer, in my opinion can make valued comments. Others that see a snap shot cannot comment one someone's health or wellbeing. We have had some negativity from family friends, people who have no idea about what we have been witnessing/living with. Maybe if carers asked these people to walk a day in our shoes, they wouldn't be so quick to pass comment.

 

[keegan2]

When family first found out about hubbys condition they would ring and ask how is. I always say he is fine. He is doing well. I did not tell them the true picture so when they did ever see him they would make comments like are you sure he is ok, he has changed so much, he is not the same person. My reply would be really and go along with what they made of the situation.

 

[di65]

I too had difficulty (at first) in getting our two sons and their families to understand fully what was happening to their Dad. They were understanding to the extent of telling me to look after myself and to get help, but I felt that their comments were made out of a duty to us. However, one night one of them 'babysat' whilst I went out to an International netball game (NZ vs Australia). I was getting texts almost every 1/4 hour telling me that he was getting agitated and looking for me all over the house. Hardly made for a relaxing evening. They were very relieved when I got back home, but it worked wonders. The boys had a conversation about it and life changed immeasurably. They were then keen on taking Dad out for a drive, or anything, even for a short time, to give me a break. I love our boys and know that they must be worried that the condition will be passed to them, as their Grandad (my husband's father was also a sufferer).
I have our youngest grandaughter (5) here today, and we are just off to visit OH in his care facility, and she is so excited.

 

[tigerlady]

Just found this thread - I think my OH dementia started 8 or 9 years ago - a couple of his lunch friends told me in 2007 that he was repeating himself and not following conversations and they thought he should see a doctor. Of course I knew and had been covering up for him as much as I could and any suggestions that he should go to a doctor had been met with "there's nothing wrong with me". Most of our close friends and family could see the gradual worsening of the dementia but he wasnt officially diagonosed until I eventually got him to have the memory test in 2013, where he scored only 8 and had his driving licence taken away immediately.

I then got regular visits from the CPN and the Alzheimers Society, but he put on a near normal show for them. Also in 2013 I was diagnosed with breast cancer and my sister stayed with my OH while I went into hospital for the surgery. They kept me in for for 5 days due to a slight complication, and to be honest it was like a holiday for me and I actually didnt want to go home. My sister said she didnt know how I was coping, and of course my OH had no awareness of what was happening to me. I managed to keep going through the chemo, but tearful phone calls to the CPN when I was really low didnt help me as every time she came he acted fine. In the end I had to video him to prove how bad he could be.

I finally cracked in June 2014, and he was sectioned, and after some traumatic months, he is now in a good care home and I have the full support and understanding of our families and close friends, who say they didnt know how I coped for so long, but it still hurts if I see acquaintances when I take him out, and they seem to look accusingly at me and say " oh but he looks so well". There is more understanding and awareness of dementia now than there was, but until people have experienced it first hand, they will never understand what we go through, and never understand how much more it is than forgetting things.

 

[fizzie]

I think people are pretty grim
My Ma was also perfect hostess in mid to late similar to Canary's experience and I just ignored it, more difficult with family.
I think people are just odd tbh - when my husband died my then 14 year old (who had found him with me) went to school and told young people and staff alike that his Dad had died and no one believed him - I was sent a letter home telling me I should be aware that my son was telling this untruth ............................. go figure!

 

[Scarlett123]

I think people are pretty grim
My Ma was also perfect hostess in mid to late similar to Canary's experience and I just ignored it, more difficult with family.
I think people are just odd tbh - when my husband died my then 14 year old (who had found him with me) went to school and told young people and staff alike that his Dad had died and no one believed him - I was sent a letter home telling me I should be aware that my son was telling this untruth ............................. go figure!

What a ***************** disgrace!!!!!

 

[fizzie]

What a ***************** disgrace!!!!!

Yes - very little fazes me anymore about the things people say and do! Trouble is my son will now never tell anyone anything, very destructive