Light at the end of the tunnel

[Musky70]

Hello
I haven't been on here for ages !
My mum has Alzheimers Disease, and has rapidly declined and things have become increasingly difficult the last 18 months or so. Currently she lives at home with my dad who has been an absolute saint for how he has coped with her. Recently we decided that she needed better care and support and my dad especially needs a peaceful life , we started looking into finding somewhere and oh boy , how hard it has been !

I should add that they are both profoundly deaf and use British Sign Language to communicate.
Because of her profound deafness, Ideally we were looking for a place where she would be able to communicate with both the staff and other residents, unfortunately this has proven very difficult. We were optimistic about placing her in residential living, for the deaf near to us , however this fell through, as it was deemed not safe because they don't have a locked door policy, and the only other place we found is shutting down soon. on a side note I have had my eyes opened during all of this and I cant believe that services for the deaf are so bad.!!! any way sorry , rant over !

Because of all that I had no choice but to look for a " normal" residential home for her
Im happy to say that we have found a home willing to take my mum, and she is moving in on Saturday. Today I have been round to their house while my dad took her out and started packing up a few items , such as familiar photos and cuddly toys that she likes, so that things feel familiar when she goes into her new room. My question is how do we tell her she is moving into the home ? what do we tell her when we get there ? im kind of dreading the day but know its got to be done for all our sakes.
any advice would be greatly appreciated
x

 

[Donkeyshere]

Hello
I haven't been on here for ages !
My mum has Alzheimers Disease, and has rapidly declined and things have become increasingly difficult the last 18 months or so. Currently she lives at home with my dad who has been an absolute saint for how he has coped with her. Recently we decided that she needed better care and support and my dad especially needs a peaceful life , we started looking into finding somewhere and oh boy , how hard it has been !

I should add that they are both profoundly deaf and use British Sign Language to communicate.
Because of her profound deafness, Ideally we were looking for a place where she would be able to communicate with both the staff and other residents, unfortunately this has proven very difficult. We were optimistic about placing her in residential living, for the deaf near to us , however this fell through, as it was deemed not safe because they don't have a locked door policy, and the only other place we found is shutting down soon. on a side note I have had my eyes opened during all of this and I cant believe that services for the deaf are so bad.!!! any way sorry , rant over !

Because of all that I had no choice but to look for a " normal" residential home for her
Im happy to say that we have found a home willing to take my mum, and she is moving in on Saturday. Today I have been round to their house while my dad took her out and started packing up a few items , such as familiar photos and cuddly toys that she likes, so that things feel familiar when she goes into her new room. My question is how do we tell her she is moving into the home ? what do we tell her when we get there ? im kind of dreading the day but know its got to be done for all our sakes.
any advice would be greatly appreciated
x

Hi we are care home moving tomorrow so I know how hard it is - we have done all the packing today and not saying anything till the morning - blaming the doctor and social worker - not sure how it will go but wish you good luck with it.

 

[Musky70]

Hi we are care home moving tomorrow so I know how hard it is - we have done all the packing today and not saying anything till the morning - blaming the doctor and social worker - not sure how it will go but wish you good luck with it.

Thankyou for your reply , oh it is so hard ,one moment I feel so guilty, then the next im like , no she needs this … Really hope everything goes as well as it can tomorrow for you all x

 

[DesperateofDevon]

Hello
I haven't been on here for ages !
My mum has Alzheimers Disease, and has rapidly declined and things have become increasingly difficult the last 18 months or so. Currently she lives at home with my dad who has been an absolute saint for how he has coped with her. Recently we decided that she needed better care and support and my dad especially needs a peaceful life , we started looking into finding somewhere and oh boy , how hard it has been !

I should add that they are both profoundly deaf and use British Sign Language to communicate.
Because of her profound deafness, Ideally we were looking for a place where she would be able to communicate with both the staff and other residents, unfortunately this has proven very difficult. We were optimistic about placing her in residential living, for the deaf near to us , however this fell through, as it was deemed not safe because they don't have a locked door policy, and the only other place we found is shutting down soon. on a side note I have had my eyes opened during all of this and I cant believe that services for the deaf are so bad.!!! any way sorry , rant over !

Because of all that I had no choice but to look for a " normal" residential home for her
Im happy to say that we have found a home willing to take my mum, and she is moving in on Saturday. Today I have been round to their house while my dad took her out and started packing up a few items , such as familiar photos and cuddly toys that she likes, so that things feel familiar when she goes into her new room. My question is how do we tell her she is moving into the home ? what do we tell her when we get there ? im kind of dreading the day but know its got to be done for all our sakes.
any advice would be greatly appreciated
x

Hoping it all goes smoothly
X

 

[Shedrech]

just to send best wishes to you both @Musky70 and @Donkeyshere

I do tend to agree that not talking about the move, though it seems 'unfair', helps in that there's then no reason to build up resistance
maybe when there say how lovely it is, and such good food and kind staff (praise anything you can , so you are giving off good vibes) then say it's a pleasant place to have a break, maybe with a bit of an excuse eg 'we didn't want to concern you but there's a problem with the central heating so best stay here while we sort it out, dad wants to stay to see they do a good job'
if it helps to say her doctor wants her to have a rest, then try that

if possible don't do a big farewell, maybe leave as a meal is being served

and have something to do afterwards so you don't just go home and worry ... not exactly a treat, something comforting

I hope the move goes as well as possible for everyone

 

[Musky70]

thankyou so much for your messages . We moved her in yesterday , it was horrible, I feel like im the worst person in the world and I haven't stopped crying . the guilt is tremendous x

 

[Hazara8]

thankyou so much for your messages . We moved her in yesterday , it was horrible, I feel like im the worst person in the world and I haven't stopped crying . the guilt is tremendous x

The feeling of "guilt" is a common one and particularly challenging in these circumstances. Yet one knows that there cannot be any option, other than deterioration at home and added strain and trauma on the spouse concerned. I can say categorically that it is by far the better option, than " emergency respite" which l experienced and which was the most challenging time in my dementia care history. Frankly it was a nightmare and virtually broke my heart. Once a proper Care Plan is in place ( the deafness is of course a fundamental element here) then things will eventually settle. Alzheimer's has ironic positives in as much as memory being often severely compromised means you can visit the Home and depart without that painful " goodbye" being evident. One sees this so often in dementia care. Family visit then leave and minutes afterwards the loved one is engaged with a Carer or other Resident and oblivious of the visit which took place a moment before. The crux lies in proper and appropriate "care" within the spectrum of dementia. I have sat for two hours holding a hand without a word being spoken and yet there was obvious calm and " communication " by sheer presence alone. Such is the nature of dementia. And with a continuity of care which is centred on empathy and true awareness of that condition, your understandable sense of "guilt" will subside and future visits will probably prove to be surprisingly uplifting. At the end of the day we are all different and there is no pat answer. But keep in mind that you put your mother first in terms of " best interests " and that has to be a source of comfort. None of this is ever easy. But our capacity to care and to love each other makes for truly life-enhancing outcomes - even when we know that dementia as yet has no cure. My warmest wishes.

 

[Shedrech]

Hi @Musky70
so sorry the move was difficult

In no way are you even a bad person... you feel as you do because you care so much
and because you care you have accepted that your mum needs residential care and have made sure she will now receive it... and you will continue to care for her alongside the staff, making sure she has whatever she needs

No-one finds this easy... Go easy on yourself... Your mum is fortunate to have you looking out for her

 

[Littlebear]

Be kind to yourself. It sounds like you have done everything to make sure your mum is in a caring & safe environment. Hopefully your mum will settle in well & she and your dad will be able to enjoy some quality time together. I watched my elderly father (mid 80s at the time) struggling to look after my step-mum with Alzheimer's. It was awful & I wouldn't wish that on anyone. Believe me you are doing the right thing for both of them. You have nothing to feel guilty about, you should be proud to have made a difficult decision which is right for them both. I hope your mum settles quickly.

 

[Musky70]

The feeling of "guilt" is a common one and particularly challenging in these circumstances. Yet one knows that there cannot be any option, other than deterioration at home and added strain and trauma on the spouse concerned. I can say categorically that it is by far the better option, than " emergency respite" which l experienced and which was the most challenging time in my dementia care history. Frankly it was a nightmare and virtually broke my heart. Once a proper Care Plan is in place ( the deafness is of course a fundamental element here) then things will eventually settle. Alzheimer's has ironic positives in as much as memory being often severely compromised means you can visit the Home and depart without that painful " goodbye" being evident. One sees this so often in dementia care. Family visit then leave and minutes afterwards the loved one is engaged with a Carer or other Resident and oblivious of the visit which took place a moment before. The crux lies in proper and appropriate "care" within the spectrum of dementia. I have sat for two hours holding a hand without a word being spoken and yet there was obvious calm and " communication " by sheer presence alone. Such is the nature of dementia. And with a continuity of care which is centred on empathy and true awareness of that condition, your understandable sense of "guilt" will subside and future visits will probably prove to be surprisingly uplifting. At the end of the day we are all different and there is no pat answer. But keep in mind that you put your mother first in terms of " best interests " and that has to be a source of comfort. None of this is ever easy. But our capacity to care and to love each other makes for truly life-enhancing outcomes - even when we know that dementia as yet has no cure. My warmest wishes.

Thankyou for your kind words. Taking my mum to the home yesterday was without doubt the worst thing I have ever experienced and her apparent "realisation" that she was not coming home just about broke my heart. She became so angry and upset. I have rung the home today , (I haven't gone today as I don't think I can face it I cant stop crying ) and they tell me she was unsettled well into the early hours but was asleep when I phoned at 9.30 am . I wonder have we done the right thing ?, I am torturing myself

 

[Musky70]

Hi @Musky70
so sorry the move was difficult

In no way are you even a bad person... you feel as you do because you care so much
and because you care you have accepted that your mum needs residential care and have made sure she will now receive it... and you will continue to care for her alongside the staff, making sure she has whatever she needs

No-one finds this easy... Go easy on yourself... Your mum is fortunate to have you looking out for her

Thankyou so much for your kind words x

 

[Musky70]

The feeling of "guilt" is a common one and particularly challenging in these circumstances. Yet one knows that there cannot be any option, other than deterioration at home and added strain and trauma on the spouse concerned. I can say categorically that it is by far the better option, than " emergency respite" which l experienced and which was the most challenging time in my dementia care history. Frankly it was a nightmare and virtually broke my heart. Once a proper Care Plan is in place ( the deafness is of course a fundamental element here) then things will eventually settle. Alzheimer's has ironic positives in as much as memory being often severely compromised means you can visit the Home and depart without that painful " goodbye" being evident. One sees this so often in dementia care. Family visit then leave and minutes afterwards the loved one is engaged with a Carer or other Resident and oblivious of the visit which took place a moment before. The crux lies in proper and appropriate "care" within the spectrum of dementia. I have sat for two hours holding a hand without a word being spoken and yet there was obvious calm and " communication " by sheer presence alone. Such is the nature of dementia. And with a continuity of care which is centred on empathy and true awareness of that condition, your understandable sense of "guilt" will subside and future visits will probably prove to be surprisingly uplifting. At the end of the day we are all different and there is no pat answer. But keep in mind that you put your mother first in terms of " best interests " and that has to be a source of comfort. None of this is ever easy. But our capacity to care and to love each other makes for truly life-enhancing outcomes - even when we know that dementia as yet has no cure. My warmest wishes.

How eloquently you have put this, thankyou. Yes the social worker has told me that they are hoping to be able to put extra support in for my mum, like a support worker who can use BSL who goes into the home, maybe daily, to communicate and interact with mum. im hoping this will happen sooner rather later x

 

[Hazara8]

How eloquently you have put this, thankyou. Yes the social worker has told me that they are hoping to be able to put extra support in for my mum, like a support worker who can use BSL who goes into the home, maybe daily, to communicate and interact with mum. im hoping this will happen sooner rather later x

Yes. Keep tabs on all of that. It is early days. My own experience was as bad as it gets I feel. My late mother had to be sedated and the days after admission were frankly devastating owing to the sheer nature of this wretched disease. You felt like plucking her out of the Home and whisking her away to a safe haven where all would be well and lovely.... a fantasy of course. From shouting and antagonistic behaviour and the look of hopelessness on a face lost in an alien world, came the mother l knew to be true, albeit held within the unremitting embrace of Alzheimer's and vascular dementia. We then had laughter and a sense of place, which was the Home. Visits were frequent and the earlier horrors were history. None of this is easy nor predictable, save for the outcome which, alas, we know is inevitable. Of course when you love a mother or father based upon an upbringing devoid of any serious issues, that love does not change. That attachment brings with it anxiety, apprehension, heartache, pity, guilt, frustration, a sense of helplessness and often raw despair. All of that and more sheds the trivial from your life and enhances the spiritual. Your humanity is nurtured by such and this in turn communicates to others by nature of its truth, a depth of awareness which can only be felt when you tread this pathway in dementia. This sounds pretentious to the uninitiated but it is actually true. We all have the one life, each one precious. Perhaps we are the only beings in the Universe who are aware of that fact. We can act upon it in a gracious and informed manner, as with the care of another. That surely is a source of immense comfort?

 

[Suziduzi]

thankyou so much for your messages . We moved her in yesterday , it was horrible, I feel like im the worst person in the world and I haven't stopped crying . the guilt is tremendous x

It is only natural to feel awful,guilty. I hated doing it to Mom and told her that she was just staying for a couple of days. She had at that time a bit of understanding of how unsafe she felt in her previous flat and we played on that and the lonliness she was feeling. 18 months on and she is ok, warm and looked after. Her dementia is progressing but for her she is safe and we have enormous peace of mind, and me and my sister now have our sister relationship back whereas we had become the carers. Things will calm down. Hope she settles in. Xx

 

[Shedrech]

hello @Suziduzi
just to offer a warm welcome to posting on DTP

I agree about the peace of mind from knowing our parent is well cared for .... it's tough to have to accept the need for residential care, but I found getting to know the staff and seeing how much they cared about my dad settled my mind

 

[Musky70]

Hello All
Just thought id update on things since we moved mum into the home, nearly 3 weeks ago now.
Well what a difference in mum, she has settled in lovely, not what I was expecting especially how she was on the first day ! She is happier, not agitated, the staff love her ! she is joining in with activities, interacting with other residents , communication doesn't seem to be a barrier as such, staff have been giving her baths and showers ! and she has even had her hair done ! She is eating ok now too. Im amazed ! We are having lovely visits with her , she is so pleased to see us , and there doesn't seem to be as much agitation and anxiousness from her, she is given the freedom to roam around the environment, and this I think helps her a lot. Wasn't much room at home to wander and I think this led to her agitation and anxiousness. I now have peace of mind for the first time in ages, knowing that she is safe and cared for, my dad is finding it a bit hard , he says he just misses her and the way she was before, but even dad thinks she looks so much better in herself. Its still early days for him, but for me I feel I have a big weight lifted of my shoulder
Thanks again to all for your kind words xxx

 

[canary]

I am so glad to hear this. A care home was a very positive experience for my mum too.
Im sure your dad misses her. It will take time for him to adapt.
xx

 

[Shedrech]

So good to hear your news @Musky70
It's such a big change for your dad, he will find his way too... knowing his wife is doing well will hopefully help him

 

[LynneMcV]

It's great that things are working out so well. I am sure your experience will help reassure others who are going through, or about to go through a similar process - so thank you for updating us on how things are going.

 

[Banjomansmate]

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