My 88 year old mum lives in bungalow two doors up from my sister (who works full-time). She has lived there for about two years, since she moved there with my dad from the family home they had lived in since 1986.
My dad died on Monday 13 April, he was 88 and his health had been deteriorating quite dramatically for the past three years. My mum got a formal diagnosis for Alzheimer's not long after they moved in (about two years ago). Mum and Dad seemed to cope okay, with support from my sister, also my brothers and I would come for the weekend or longer at least once a month. Mum would go to a lunch club (day care) twice a week . He and my mum had managed quite well as a unit, we would never really speak about the Alzheimer's or dad's condition to Mum - if you ever tried to broach the subject, they would avoid talking about it, not see the relevance with their situation or just get distressed; so we would just take the easy option.
Anyway, since Dad died, between myself and my siblings, we have been supporting mum in her own home, staying with her and giving her 24 hour care, but we've come to the end of this being tenable.
Mum struggles to be alone, if I go into the garden or the garage and she call's out for me, she can't settle until she's found me, getting more and more agitated. She settled beautifully to hemming my trousers earlier today, but now she has finished that task I can see and hear her working herself up because she is not being occupied. I could suggest doing a jigsaw or colouring in, but it only occupies her if I sit with her. I've reminded her that she wanted to do some knitting today and she's made positive moves towards getting on with it (it doesn't always capture her attention).
At some point during the day she'll say that dad'll be getting in from work soon, or mention that he's still out and wonder what time he'll be getting back, she'll eventually ask if I've seen dad lately, can we get in contact him - maybe ring the base or the mess to get a message to him (he was in the Air Force) so I'll murmur agreements or exclaim I'm not sure until I'm ready to gently break the news about what the situation actually is (Dad died 11 weeks ago, you were with him, he was cremated, yes that was what he wanted) She'll will get upset (or sometimes not so much - being more stoical about fate and that's life, etc), before asking if she's got my sister's telephone number - so she can ask her if she knows how to contact Dad. When she starts to grasp that dad won't be coming back she'll decide that she won't stay here - she'll go back home and stay with her mum. This goes on and on in a big loop, I try to be as honest and consistent as possible in my answers.
In moments of clarity she'll ask what is she to do now, so I'll talk to her about how the current set up (with us staying with her permanently) isn't sustainable long term, that she needs 24 hour support and more stimulation and focus than we can give her and we all need to consider the next step...
She doesn't think that she needs more care, that she can manage in her home and when I try to explain about her short term memory issues, that she won't cook for herself or take her medication she won't have it that she has a problem - and asks for proof - which I can give her - but of course she can't really remember any of the incidents I talk about. To be honest incidents only really happen once because we've created such a safety net that we're ready and prepared for the next time (e.g. locking the front door and hiding the key when I'm in the garden in case I don't hear her calling out for me and she goes into the street looking for me) I wonder if we've done her any favours, we're so worried about her getting distressed.
Anyway, I've been trying to convey a full picture - but of course, so much more happens around this condition within a domestic setting; the point I am trying to get to is that she has been offered a place in a residential care home - my sister and I will take her there on Wednesday of this week.
We know it's the right time and the right move for her but we haven't prepared her for it. When I mention it's the next step she'll say it's not right for her, or she'll think about it. When she softened towards the idea of it she started to get agitated at the thought of another move ( she's moved about twenty times throughout her married life but only once in the last thirty years).
I'm dreading Wednesday, I've furtively removed some of her clothes to my sisters for her to pack. I'm making mental notes about pictures and favoured items that she might like to have with her.
We thought we'd tell mum on the morning that I've been called back to work urgently, one brother has genuinely returned to work and we'll say our other one has something to stop him coming back stay with her. We hope to present the stay at the residential home as respite care and an opportunity for her to have a holiday - the home is quite new and well presented and she'll have en suite facilities, so it might give the impression of it being a hotel. Unfortunately because of this COVID situation we can't even visit beforehand or be with her as we've dropped her off - and who knows when we will be able to see her and give her a hug again.
I'm so worried that this is the wrong thing to do - that I will regret our decision - that mum will be distressed and think we've abandoned her - now is my last chance to put the brakes on and live with the consequences of being away from my family on a more longterm basis.
My dad died on Monday 13 April, he was 88 and his health had been deteriorating quite dramatically for the past three years. My mum got a formal diagnosis for Alzheimer's not long after they moved in (about two years ago). Mum and Dad seemed to cope okay, with support from my sister, also my brothers and I would come for the weekend or longer at least once a month. Mum would go to a lunch club (day care) twice a week . He and my mum had managed quite well as a unit, we would never really speak about the Alzheimer's or dad's condition to Mum - if you ever tried to broach the subject, they would avoid talking about it, not see the relevance with their situation or just get distressed; so we would just take the easy option.
Anyway, since Dad died, between myself and my siblings, we have been supporting mum in her own home, staying with her and giving her 24 hour care, but we've come to the end of this being tenable.
Mum struggles to be alone, if I go into the garden or the garage and she call's out for me, she can't settle until she's found me, getting more and more agitated. She settled beautifully to hemming my trousers earlier today, but now she has finished that task I can see and hear her working herself up because she is not being occupied. I could suggest doing a jigsaw or colouring in, but it only occupies her if I sit with her. I've reminded her that she wanted to do some knitting today and she's made positive moves towards getting on with it (it doesn't always capture her attention).
At some point during the day she'll say that dad'll be getting in from work soon, or mention that he's still out and wonder what time he'll be getting back, she'll eventually ask if I've seen dad lately, can we get in contact him - maybe ring the base or the mess to get a message to him (he was in the Air Force) so I'll murmur agreements or exclaim I'm not sure until I'm ready to gently break the news about what the situation actually is (Dad died 11 weeks ago, you were with him, he was cremated, yes that was what he wanted) She'll will get upset (or sometimes not so much - being more stoical about fate and that's life, etc), before asking if she's got my sister's telephone number - so she can ask her if she knows how to contact Dad. When she starts to grasp that dad won't be coming back she'll decide that she won't stay here - she'll go back home and stay with her mum. This goes on and on in a big loop, I try to be as honest and consistent as possible in my answers.
In moments of clarity she'll ask what is she to do now, so I'll talk to her about how the current set up (with us staying with her permanently) isn't sustainable long term, that she needs 24 hour support and more stimulation and focus than we can give her and we all need to consider the next step...
She doesn't think that she needs more care, that she can manage in her home and when I try to explain about her short term memory issues, that she won't cook for herself or take her medication she won't have it that she has a problem - and asks for proof - which I can give her - but of course she can't really remember any of the incidents I talk about. To be honest incidents only really happen once because we've created such a safety net that we're ready and prepared for the next time (e.g. locking the front door and hiding the key when I'm in the garden in case I don't hear her calling out for me and she goes into the street looking for me) I wonder if we've done her any favours, we're so worried about her getting distressed.
Anyway, I've been trying to convey a full picture - but of course, so much more happens around this condition within a domestic setting; the point I am trying to get to is that she has been offered a place in a residential care home - my sister and I will take her there on Wednesday of this week.
We know it's the right time and the right move for her but we haven't prepared her for it. When I mention it's the next step she'll say it's not right for her, or she'll think about it. When she softened towards the idea of it she started to get agitated at the thought of another move ( she's moved about twenty times throughout her married life but only once in the last thirty years).
I'm dreading Wednesday, I've furtively removed some of her clothes to my sisters for her to pack. I'm making mental notes about pictures and favoured items that she might like to have with her.
We thought we'd tell mum on the morning that I've been called back to work urgently, one brother has genuinely returned to work and we'll say our other one has something to stop him coming back stay with her. We hope to present the stay at the residential home as respite care and an opportunity for her to have a holiday - the home is quite new and well presented and she'll have en suite facilities, so it might give the impression of it being a hotel. Unfortunately because of this COVID situation we can't even visit beforehand or be with her as we've dropped her off - and who knows when we will be able to see her and give her a hug again.
I'm so worried that this is the wrong thing to do - that I will regret our decision - that mum will be distressed and think we've abandoned her - now is my last chance to put the brakes on and live with the consequences of being away from my family on a more longterm basis.