Scary Day

[feinn]

So my wife told me this morning she wants her own space. That she shouldn't have let people in her house and wants me to leave. She was diagnosed with MCI in 2016 and then early onset alzheimers in 2018. She's 60 and we've been together since we were 16 and married at 18. She has been my whole life and although I know its the disease talking it's still distressing.
And as I type this she has just had the conversation anew with me again. I just agree and tell her Ok but I can't move out today and that satisfies her for the moment.
On her diagnosis I gave up work to look after her and we moved last year into a retirement community. A quiet village setting, a social centre where we could have understanding company and at first she did well. Then lockdown struck. The centre closed, briefly re-opened and closed again. I was terrified she would contract covid and be in hospital without me, without any context, surrounded by people in full PPE. It would be a nightmare. Unable to fix in her mind the need to socially distance and wear a mask we've been at home since March and her condition has deteriorated at a frightening speed.
She doesn't recognise me, her sons or her grandchildren. She mutters constantly, talking herself though any actions. I'm going to wash the tea-towels, then I'll fold them, they belong in the cupboard...
Memantine was added to her medication but it has made no difference.
Cards, jigsaws, games, puzzles, TV, quizzes I can't find anything to to hold her attention and she wanders from room to room in our bungalow. She makes short perfunctory answers to avoid conversations. I never thought I 'd be sick of the sound of my own voice but if I'm not tlqking there's usually quiet, When we go for walks, now limited by weather as she hates the cold, she marches like a soldier striding ahead, not talking and because of an old work injury I struggle to even keep up.
Up till now i have focussed on counting our blessings. I have friends who lost loved ones unexpectedly and know how devastating that was. I felt at least we'd have some time together and we do but not in a way I could have foreseen.
Like most carers I try to be always positive but today is a scary day and makes me fear for the future.
Apologies for being downbeat but I just needed a release today. Any distraction tactics advice would be very welcome.

 

[Canadian Joanne]

@feinn that is such a distressing day. It is heartbreaking when we are not recognized. Does that come and go with your wife? It did with my mother.

As for distractions and the silence, would music help? Most people with dementia enjoy it. What about folding the laundry? I know that sounds odd but if your wife is very focused on tasks, something like that might work. Once done, move it away and later bring it back unfolded, if you think she wouldn't remember.

 

[feinn]

@feinn that is such a distressing day. It is heartbreaking when we are not recognized. Does that come and go with your wife? It did with my mother.

As for distractions and the silence, would music help? Most people with dementia enjoy it. What about folding the laundry? I know that sounds odd but if your wife is very focused on tasks, something like that might work. Once done, move it away and later bring it back unfolded, if you think she wouldn't remember.

Thanks, I'll try the laundry manoeuvre. We always have music on. Although our music was punk, pop and rock it's her Dad's music which he played all the time when she a girl, Jim Reeves and crooners like him she enjoys. Strange what this disease does.
Recognition comes and goes. I have pulled my metaphorical socks up and feel a bit better now.
I'll ask the GP to check there's no underlying infection making things worse.

 

[Canadian Joanne]

Good idea to check with the GP. UTIs are a particular problem and can be asymptomatic for physical signs.

 

[Chaplin]

Sorry that today was tougher than usual. Just as our loved one’s with dementia have good and bad days, it follows that Carers do to. Sadly I think Covid has accelerated everyone’s mental health decline and it’s important that you reach out for support when you need it too. Your wife’s behaviours sound similar to my mum’s and when she was agitated walking room to room, we would get a huge box of old photos out and she would sit down and when she could recall the faces it would lift her mood and easily lose and hour or two. Just an idea to try. Good to hear your feeling better and definitely get her checked out by the GP, infections caused havoc and make a challenging day a horrible day.

 

[feinn]

Sorry that today was tougher than usual. Just as our loved one’s with dementia have good and bad days, it follows that Carers do to. Sadly I think Covid has accelerated everyone’s mental health decline and it’s important that you reach out for support when you need it too. Your wife’s behaviours sound similar to my mum’s and when she was agitated walking room to room, we would get a huge box of old photos out and she would sit down and when she could recall the faces it would lift her mood and easily lose and hour or two. Just an idea to try. Good to hear your feeling better and definitely get her checked out by the GP, infections caused havoc and make a challenging day a horrible day.

Thanks for coming back to me. We created lots of photo albums in the early days and I will try again to distract with those.

 

[silkiest]

Hi @feinn, there are quite a few fidget/ sensory toys on the market for people with alzheimers. There might be some that would fit in with activities she enjoyed in the past. If your wife was artistic she may enjoy the reusable water painting kits - use water only to show the colour and plain white when dry again. My mum used to sew and knit and still enjoys sorting wool and cloth even if she makes nothing with it.

 

[Margeaux]

So my wife told me this morning she wants her own space. That she shouldn't have let people in her house and wants me to leave. She was diagnosed with MCI in 2016 and then early onset alzheimers in 2018. She's 60 and we've been together since we were 16 and married at 18. She has been my whole life and although I know its the disease talking it's still distressing.
And as I type this she has just had the conversation anew with me again. I just agree and tell her Ok but I can't move out today and that satisfies her for the moment.
On her diagnosis I gave up work to look after her and we moved last year into a retirement community. A quiet village setting, a social centre where we could have understanding company and at first she did well. Then lockdown struck. The centre closed, briefly re-opened and closed again. I was terrified she would contract covid and be in hospital without me, without any context, surrounded by people in full PPE. It would be a nightmare. Unable to fix in her mind the need to socially distance and wear a mask we've been at home since March and her condition has deteriorated at a frightening speed.
She doesn't recognise me, her sons or her grandchildren. She mutters constantly, talking herself though any actions. I'm going to wash the tea-towels, then I'll fold them, they belong in the cupboard...
Memantine was added to her medication but it has made no difference.
Cards, jigsaws, games, puzzles, TV, quizzes I can't find anything to to hold her attention and she wanders from room to room in our bungalow. She makes short perfunctory answers to avoid conversations. I never thought I 'd be sick of the sound of my own voice but if I'm not tlqking there's usually quiet, When we go for walks, now limited by weather as she hates the cold, she marches like a soldier striding ahead, not talking and because of an old work injury I struggle to even keep up.
Up till now i have focussed on counting our blessings. I have friends who lost loved ones unexpectedly and know how devastating that was. I felt at least we'd have some time together and we do but not in a way I could have foreseen.
Like most carers I try to be always positive but today is a scary day and makes me fear for the future.
Apologies for being downbeat but I just needed a release today. Any distraction tactics advice would be very welcome.

So my wife told me this morning she wants her own space. That she shouldn't have let people in her house and wants me to leave. She was diagnosed with MCI in 2016 and then early onset alzheimers in 2018. She's 60 and we've been together since we were 16 and married at 18. She has been my whole life and although I know its the disease talking it's still distressing.
And as I type this she has just had the conversation anew with me again. I just agree and tell her Ok but I can't move out today and that satisfies her for the moment.
On her diagnosis I gave up work to look after her and we moved last year into a retirement community. A quiet village setting, a social centre where we could have understanding company and at first she did well. Then lockdown struck. The centre closed, briefly re-opened and closed again. I was terrified she would contract covid and be in hospital without me, without any context, surrounded by people in full PPE. It would be a nightmare. Unable to fix in her mind the need to socially distance and wear a mask we've been at home since March and her condition has deteriorated at a frightening speed.
She doesn't recognise me, her sons or her grandchildren. She mutters constantly, talking herself though any actions. I'm going to wash the tea-towels, then I'll fold them, they belong in the cupboard...
Memantine was added to her medication but it has made no difference.
Cards, jigsaws, games, puzzles, TV, quizzes I can't find anything to to hold her attention and she wanders from room to room in our bungalow. She makes short perfunctory answers to avoid conversations. I never thought I 'd be sick of the sound of my own voice but if I'm not tlqking there's usually quiet, When we go for walks, now limited by weather as she hates the cold, she marches like a soldier striding ahead, not talking and because of an old work injury I struggle to even keep up.
Up till now i have focussed on counting our blessings. I have friends who lost loved ones unexpectedly and know how devastating that was. I felt at least we'd have some time together and we do but not in a way I could have foreseen.
Like most carers I try to be always positive but today is a scary day and makes me fear for the future.
Apologies for being downbeat but I just needed a release today. Any distraction tactics advice would be very welcome.

Such difficult days take their toll. My husband, aged 62, was diagnosed four years ago and has deteriorated significantly this year. His obsessive and repetitive behaviour is over- bearing sometimes and emotionally exhausting for both of us.
It is important to take time for yourself , even to have a walk , just to give yourself some space.

 

[Bunpoots]

Hi @Margeaux

Welcome to Dementia Talking Point ?