Hello and tonight I am really tired after a 12 hour round trip to see mum in her care home. I put this heading as dementia really does effect people in so many different ways. I am exhausted from mum's mood swings - but also the demands of dealing with all the other residents different ways too. Dementia makes me so sad. I just wanted to share a side effect that probably makes me sadder than the rest at the moment - mum was never ever an affectionate person. We got on well but she didn't hug or kiss us very much growing up (by the way I am 47 not 12!!). But now she is the most tactile of people and that probably freaks me out more than many things. Strange though it sounds. I unpacked her things for the umpteenth time - this time trying the story of how she is embarrassing me by looking like a bag lady (proud woman - worked for a while). 6 bags and 2 hours later I just sat in the car and cried. Knowing that tomorrow there will be more black bags and more packing. The DOL assessor tells me there is no doubt that she is in the right place but the whole loss of liberty thing makes me cry every day. the thing I have learnt most is that no 2 cases of dementia are the same. My mum is mobile but her brain is much more effected than some of those who are less mobile. There are people there who cry and shout and then there are people there who laugh and chat like there is a great day to be had. All of our cases are different and yet we all share the same heart ache and guilt as carers and we share the same sense of loss and helplessness. Every visit I just wish I could find hope instead of despair. For those of us dealing with the fast on set the hardest part is learning to live with things getting worse.... I wish wish wish that instead of spending a fortune on mum's care I could spend all the money on finding a cure or a way to make it easier for everyone. I'll sign out now and try to hold my head up and get back to all the work emails I have missed today and put my smile back on for clients and just say one last time - if you have met one person with dementia then you have met one person with dementia - they are all so unique in their journeys
If you have met one person with dementia then you have met one person with dementia
- Thread starter pjapril
- Start date
I suppose that's something that comes with visiting someone in a care home, you get to see so many other people with AZ and it does give you a sense of how different they all are.
I've known some of the residents there for nearly 2 years now, I've met and spoken to a lot of their family, friends and visitors and learned something about most of them in that time.
They're a mixed a bunch of people you could want to meet, former teachers and one headmistress, engineers, 3 nurses a bus driver and a truck driver too ages from 62 to 91 that I know of although some may be older.
Talking to relatives I know that one woman has 9 children and a couple of the others have 6, one even has 2 children older than me (62 this month).
As you say some of the least mobile are sometimes the ones with the most ability and some of the more mobile ones can have no cognition at all, there really is no logic in it. I can have a conversation with an immobile woman of 90 that makes relative sense where my 64 year old wife can no longer speak but can walk.
Age, social class, former academic talents seem to count for nothing nor is the extent to which they have "no filter" in terms of what they are prepared to say or do defies description.
I'd no idea how big the picture was until my wife went into care.
K
I've known some of the residents there for nearly 2 years now, I've met and spoken to a lot of their family, friends and visitors and learned something about most of them in that time.
They're a mixed a bunch of people you could want to meet, former teachers and one headmistress, engineers, 3 nurses a bus driver and a truck driver too ages from 62 to 91 that I know of although some may be older.
Talking to relatives I know that one woman has 9 children and a couple of the others have 6, one even has 2 children older than me (62 this month).
As you say some of the least mobile are sometimes the ones with the most ability and some of the more mobile ones can have no cognition at all, there really is no logic in it. I can have a conversation with an immobile woman of 90 that makes relative sense where my 64 year old wife can no longer speak but can walk.
Age, social class, former academic talents seem to count for nothing nor is the extent to which they have "no filter" in terms of what they are prepared to say or do defies description.
I'd no idea how big the picture was until my wife went into care.
K
Agree with you both whole heartedly.
When my Mum first went into care, Mum was one of the better ones.
Good mobility, still able to hold a reasonable conversation, smiling, laughing, joining in..... in fact some of the relatives of others there commented on how good Mum was, too good to be there.
And Yes compared to most of the other residents, Mum was.
There were a few there which Mum gave a wide berth, and despite best efforts I will admit we did too.
We just weren't used to their level of dementia.
My Oh how time changes things.
Mum rapidly deteriorated 7 mnths later with UTI's, suspected delerium and a mild chest infection.
Shes never been the same since, to the point where she is now on anti pshychotic meds - Quetiapine.
We have had a lot of ups and downs with medication, but fingers crossed Mum stablises for a while.
Now I suspect my Mum is one of the ones that relatives of some of the new residents give a bit of a wide berth.
And now we have gotten to know all the other longer term residents and their families. Their names, their stories, some of their life. You know when they are not there, sick, or had a fall, and sadly when they have passed away.
We also have an ex All Black player ( NZ National Rugby Team) from the 1960's, who has frontal temporal dementia and likely caused by head injuries and concussions from playing rugby.
and throughout all of this, Mum still has a brother and sister who think we have put have put her in care just due to a "little bit of a memory problem"
Oh how I wish Mum did just have a "little bit of a memory problem"
When my Mum first went into care, Mum was one of the better ones.
Good mobility, still able to hold a reasonable conversation, smiling, laughing, joining in..... in fact some of the relatives of others there commented on how good Mum was, too good to be there.
And Yes compared to most of the other residents, Mum was.
There were a few there which Mum gave a wide berth, and despite best efforts I will admit we did too.
We just weren't used to their level of dementia.
My Oh how time changes things.
Mum rapidly deteriorated 7 mnths later with UTI's, suspected delerium and a mild chest infection.
Shes never been the same since, to the point where she is now on anti pshychotic meds - Quetiapine.
We have had a lot of ups and downs with medication, but fingers crossed Mum stablises for a while.
Now I suspect my Mum is one of the ones that relatives of some of the new residents give a bit of a wide berth.
And now we have gotten to know all the other longer term residents and their families. Their names, their stories, some of their life. You know when they are not there, sick, or had a fall, and sadly when they have passed away.
We also have an ex All Black player ( NZ National Rugby Team) from the 1960's, who has frontal temporal dementia and likely caused by head injuries and concussions from playing rugby.
and throughout all of this, Mum still has a brother and sister who think we have put have put her in care just due to a "little bit of a memory problem"
Oh how I wish Mum did just have a "little bit of a memory problem"
Grr! It makes me SO mad when dementia is dismissed as a ‘bit of a memory problem’. The number of people who have said to my OH, ‘oh I think we all have a touch of dementia at our age. I can never remember names.’ It completely dismisses and belittles the hell of dementia.
You have no idea how much this post helped me this morning. After a guilt ridden sleepless night. A thoughtless care worker said to me yesterday- oh people always ask why your mum is here. It's hard enough questioning yourself when you do this. I just said - oh maybe due to the 18 page DOL assessment and walked on. But then of course tortured myself endlessly - until I just read your post. And reminded myself that I can only have where the experts tell me she has to be. If only it was as simple as people who are not doing this realise. Mums rationale was always - oh all my friends just laugh and say this is the problem of getting old (at which point she had done something crazy like try to climb in a wheelie bin or up a 6 ft ladder...). I can't thank you enough for your post - I think without it I would have had another bad day - just knowing other similar cases and situations is one of the best things about this forum. Thank you for taking the time xAgree with you both whole heartedly.
When my Mum first went into care, Mum was one of the better ones.
Good mobility, still able to hold a reasonable conversation, smiling, laughing, joining in..... in fact some of the relatives of others there commented on how good Mum was, too good to be there.
And Yes compared to most of the other residents, Mum was.
There were a few there which Mum gave a wide berth, and despite best efforts I will admit we did too.
We just weren't used to their level of dementia.
My Oh how time changes things.
Mum rapidly deteriorated 7 mnths later with UTI's, suspected delerium and a mild chest infection.
Shes never been the same since, to the point where she is now on anti pshychotic meds - Quetiapine.
We have had a lot of ups and downs with medication, but fingers crossed Mum stablises for a while.
Now I suspect my Mum is one of the ones that relatives of some of the new residents give a bit of a wide berth.
And now we have gotten to know all the other longer term residents and their families. Their names, their stories, some of their life. You know when they are not there, sick, or had a fall, and sadly when they have passed away.
We also have an ex All Black player ( NZ National Rugby Team) from the 1960's, who has frontal temporal dementia and likely caused by head injuries and concussions from playing rugby.
and throughout all of this, Mum still has a brother and sister who think we have put have put her in care just due to a "little bit of a memory problem"
Oh how I wish Mum did just have a "little bit of a memory problem"
I've had the same from my invisible brother - not to my face - "There's nothing wrong with Mum, she's just got a bit of a memory problem".... apparently I have a lovely life, (I look after her full time in her home).
Yes, my life is wonderful, watching my lovely, gentle Mum decline, hardly able to speak, stuck in bed with me feeding her and doing all her personal care which must be so hard for her in her clearer moments.
So difficult for you pjapril, being such a distance away and working so hard to care for your Mum.
Button up your hard shell and let it roll off you if you can, some people will just never understand.
Yes, my life is wonderful, watching my lovely, gentle Mum decline, hardly able to speak, stuck in bed with me feeding her and doing all her personal care which must be so hard for her in her clearer moments.
So difficult for you pjapril, being such a distance away and working so hard to care for your Mum.
Button up your hard shell and let it roll off you if you can, some people will just never understand.
Totally agree. Everyone’s journey is different and every day is different. Just back from visiting Mum in care home and today was not a good day. She has now started shouting ‘Help me, help me’ continually and is keeping residents awake with this going on all night. Doctor was visiting as I was there and Mum has no medical needs. Going to try a different sedative. Doctor asked when she was last reviewed by LLAMS team. This was over a year ago and was discharged back to GP at that time. I continually asked the GP she was with before move to care home how he would support Mum but fell on deaf ears. Like everyone else I feel so helpless. I suppose as always I will take tomorrow as a new day with all its ups and downs. Helps to read others threads. Thank you.
Thank you - my hard shell has too many holes at the moment!!! I torture myself with what ifs and what more could I do. But have to keep paying the bills!! Your brother sounds just like my sister who from a distance tells me that all is fine and won't Christmas be nice in such a nice place (had to control my temper on that one !!) Thanks for your response - means so much when I'm struggling here to stay sane!! X
