I can see you have lots to contend with Canary. More than me. But I can see similarities here. My mother was in the habit(pre femoral head fracture) of getting her wash and bed clothes on before the evening carers arrived at 8 or 8.30 pm. it was a little routine she was getting used to....and, I think, proof to herself that she could do this. I felt so much less concerned for her because she was being looked in on though and getting the bedtime medication...and it meant I was less likely to be phoned with a problem in the evening which I might have to go out to.
How is it that other people's perceptions are so different to mine?
- Thread starter Muttimuggle
- Start date
It is amazing how many people are phoning and saying "She will make a good recovery" from the fracture to the femur. It is not that I am being purposefully negative. I think I am just looking at the situation and being honest. Hopefully she picks up from this and gets some other kind of more suitable care. I think people just think they are saying the right thing....the thing which sort of just closes off the conversation, but I don't really find it helpful. My mother is 90, nearly 91 after all. I hope I am not being negative here, just seeing it for what it is.
No. You are not being negative. You are seeing the true reality for what it is. I have never been able to deal with "head in the sand" people. I much prefer dealing and facing problems head on.. My dad is 89.
When my husband was in hospital recovering from his cardiac arrest and months before his diagnosis of Alzheimer’s, I had a phone call from an Occ. Therapist about some information I had given the hospital about his state of mind.
She questioned my statement so I suggested to her that he had fooled her too. We had considerable words over the phone but she had come to a conclusion based on some basic tests and a short conversation, not my years of experience and my ongoing observations of him.
That taught me a lot about the attitude of some professionals.
She questioned my statement so I suggested to her that he had fooled her too. We had considerable words over the phone but she had come to a conclusion based on some basic tests and a short conversation, not my years of experience and my ongoing observations of him.
That taught me a lot about the attitude of some professionals.
I'll never forget the consultant who insisted, 'There is nothing wrong with your mother!' He'd had a 10 minute conversation with her where she'd responded appropriately and had totally duped him. She'd told him a load of made-up stuff about her family and herself, what we all did and where we lived, etc. But none of it was true! Five minutes before that she was asking me if her parents had told me where she was (in hospital) and that she had never met my children. Kept going on about helping to evacuate the children after all the planes crashed...
Her situation took a huge drop - she went from living at home, undiagnosed and independent to needing 24/7 care following a fall getting off the bus.
After she'd been in a care home for a year, she was pushed over by another resident and broke her neck of femur. But I'm pleased to say, she did recover and spent the next 2 years walking with a frame. The hardest bit was getting her to do the exercises so I had to bully her... (I don't regret it. It worked and she wouldn't have walked again otherwise.)
Her situation took a huge drop - she went from living at home, undiagnosed and independent to needing 24/7 care following a fall getting off the bus.
After she'd been in a care home for a year, she was pushed over by another resident and broke her neck of femur. But I'm pleased to say, she did recover and spent the next 2 years walking with a frame. The hardest bit was getting her to do the exercises so I had to bully her... (I don't regret it. It worked and she wouldn't have walked again otherwise.)
Just to add, I'd spent the years before mum's crisis telling family she had dementia but it fell on deaf ears. It was incredibly frustrating. As @Lawson58 says - why on earth would you make this stuff up? The implication is that you're lying, exaggerating or even inventing stuff 
I can only conclude that we are a lot more observant than our siblings (and medics) who tend to take everything at face value. We on the the other hand notice all the nuances and We Know....
I can only conclude that we are a lot more observant than our siblings (and medics) who tend to take everything at face value. We on the the other hand notice all the nuances and We Know....
Yes, it's laughable how health and social care staff believe everything that a PWD says unless s/he says something utterly preposterous. It strikes me that many lack professional curiosity and are too inclined to accept things at face value. It makes you wonder what they think of the friends and relatives who are expressing concerns..........
I was 'fortunate' in the case of my mother because she did poorly on the MMSE and was given an immediate diagnosis of dementia by the consultant. Later, when she was in hospital she told the hospital SW that she didn't have any children (she had three), which he took as a sign that her dementia was advanced, although her verbal skills were still very good and she still presented quite well.
I was 'fortunate' in the case of my mother because she did poorly on the MMSE and was given an immediate diagnosis of dementia by the consultant. Later, when she was in hospital she told the hospital SW that she didn't have any children (she had three), which he took as a sign that her dementia was advanced, although her verbal skills were still very good and she still presented quite well.
Oh @Muttimuggle it is so infuriating isn't it? Because my husband can walk and talk I have had people tell me that he 'is not too bad', and ask if I am sure he as dementia!! On top of that Social Services have deemed him to have capacity, and yet he has no short term memory, very limited independent functioning and has little understanding of what is going on. They don't seem to understand anything about how dementia affects sufferers. He physically assaulted me and his family looked at getting legal advice to check out his rights - how messed up is that? It just makes the carer feel even more lonely and isolated and makes it harder to get the support that is needed. If I didn't have access to Talking Point I would think I was going mad!!!!
This is sometimes called "host Mode" my OH can do it very well when we have guests, but crashes a long way after they have gone. Some folks refer to it as bringing their A game! Don't feel bad or beat yourself up. Your Mum might well be in "host mode" for her cousin.
Thank you for all this back up support from such lovely people on here. I went today to see mum. She is shortly to be moved to a rehab centre when a place becomes available. The hospital ward, specifically for neck of the femur breaks, is pretty busy at the moment and I think the move will surely be preferable. She is still catheterised and the OT said she shouldn't be now...but she is on a water tablet. That would be a nightmare for an understaffed ward whilst trying to encourage hydration. She was encouraged to do 5 very difficult shuffle steps forward with a wheelie zimmer with me cheering her on.
Apart from that her cognition is definitely worse, her voice is weak and screechy...although, as before some of the time she is understanding and making sense. I feel sad today. I can see her decline. She has, for many years not really shown a lot of emotion but she looks shell shocked.
I asked her how she got on with my older cousin who went yesterday. This was the cousin(ex nurse, many years ago) who told me she had asked the staff to find a porter who could bring Mum a wheelchair and said surely they could do that in a "big hospital like this", in order to take Mum to go to a a proper toilet! She even asked if they could move her auntie out of this hospital to a completely different one! Anyway, my mum actually remembered her visit and said it was OK but this cousin was very upset and kept hugging her! I understand it now- a cousin who has not been to see her for years and years and was told about her dementia, getting a big shock about what she sees, and, just like my invisible brother - "trying to get things sorted out!! Blaming the service and making a fuss, maybe even blaming the main carer(in my brother's case)...all because they are finding what they see difficult to handle.
So when the cousin said my mother was not confused at all it is irrelevant to me. She is wrong and I don't think the staff at this hospital are doubting now of my mother's confusion and dementia but I will see what the next place brings.
Apart from that her cognition is definitely worse, her voice is weak and screechy...although, as before some of the time she is understanding and making sense. I feel sad today. I can see her decline. She has, for many years not really shown a lot of emotion but she looks shell shocked.
I asked her how she got on with my older cousin who went yesterday. This was the cousin(ex nurse, many years ago) who told me she had asked the staff to find a porter who could bring Mum a wheelchair and said surely they could do that in a "big hospital like this", in order to take Mum to go to a a proper toilet! She even asked if they could move her auntie out of this hospital to a completely different one! Anyway, my mum actually remembered her visit and said it was OK but this cousin was very upset and kept hugging her! I understand it now- a cousin who has not been to see her for years and years and was told about her dementia, getting a big shock about what she sees, and, just like my invisible brother - "trying to get things sorted out!! Blaming the service and making a fuss, maybe even blaming the main carer(in my brother's case)...all because they are finding what they see difficult to handle.
So when the cousin said my mother was not confused at all it is irrelevant to me. She is wrong and I don't think the staff at this hospital are doubting now of my mother's confusion and dementia but I will see what the next place brings.
@Muttimuggle - this 'host mode' thing is so hard. I had a similar thing with friends and relatives nearer to the beginning of my dad's journey. He pulled out all the stops - had lots of learned social phrases and responses, which he used when talking to people. However, spending time with him on normal days, he was going downhill fast. It was so frustrating and at times, really did make me think it was me that was losing the plot!
I don't know what I would do without Talking Point - and having so many supportive people reassuring me.
You are not going mad at all. You know your mum. Keep going and stay strong... and keep sharing on the forum.
I don't know what I would do without Talking Point - and having so many supportive people reassuring me.
You are not going mad at all. You know your mum. Keep going and stay strong... and keep sharing on the forum.
Yes, there are plenty of 'Prodigal relatives' around. They swoop in and bustle about making suggestions (which you are expected to implement), pointing out things that need to be done (forgetting about or not noticing the million other things that you've done) and generally making a big fuss of their relative (buying flowers and a cake and perhaps taking them out for lunch). They very often find fault with the paid carers, the GP, the hospital etc and make it their business to 'get things moving' / complain about the PWD's care. Then they disappear off again. It's very easy to be 'dynamic' on a short visit when you have no other commitments and won't be following anything up.
I've fallen out with my friend's relative. I keep her informed about anything important but don't have anything to do with her otherwise as I found her suggestions unhelpful and, quite frankly, I consider her manipulative and exploitative. After the hours and hours that I have spent helping and supporting my friend I find her relative's refusal to accept that there is anything wrong with my friend insulting.
I've fallen out with my friend's relative. I keep her informed about anything important but don't have anything to do with her otherwise as I found her suggestions unhelpful and, quite frankly, I consider her manipulative and exploitative. After the hours and hours that I have spent helping and supporting my friend I find her relative's refusal to accept that there is anything wrong with my friend insulting.
On another forum, they were known as "helicopters" because they landed suddenly almost from nowhere, kicked up a whole load of dirt and chaos, then took off again leaving you to sort everything out.
My children were very responsible when it came to caring for their dad and spent hours with him during his worsening illness in the nursing home, with him when he died.
However, they mentioned recently that he hadn’t wanted them to go and visit on Father’s Day and couldn’t understand why. They did go and see him and had a nice visit. But in spite of knowing him very well, they just didn’t get why he said not to come.
I pointed out that he probably knew it would be his last Father’s Day and in his eyes, the easiest way to deal with it was to not have to deal with it. So stay away please .
So sometimes, people can’t see the wood for the trees, even when they are themselves the carers in the truest sense of the word. They simply didn’t know him as I had.
However, they mentioned recently that he hadn’t wanted them to go and visit on Father’s Day and couldn’t understand why. They did go and see him and had a nice visit. But in spite of knowing him very well, they just didn’t get why he said not to come.
I pointed out that he probably knew it would be his last Father’s Day and in his eyes, the easiest way to deal with it was to not have to deal with it. So stay away please .
So sometimes, people can’t see the wood for the trees, even when they are themselves the carers in the truest sense of the word. They simply didn’t know him as I had.
When I told my brother that his dad had dementia and needed some help, he turned his back on me and started talking to his dog. He might have just as well stuck his fingers in his ears and sung 'Ting a ling a loo'
That was very sad for you to witness how much sadness your husband had, so much that he didn't want to be seen by his loved ones....and in some ways sadder because of that self awareness he must have had.x
