Where do we go from here?

[Georgina63]

My parents both have AD, mum more advanced than dad and with quite different needs,still living at home, with care. A week ago, they returned home after a 2 week respite stay (their first) at a local care home whilst I was away on holiday. The stay went ok (no major incidents), helped by daily visits from their homecare team. Dad is happy to be home, and occupied by the garden which he loves, but Mum is now quite restless and I've been visiting more often (they have 3-4 care visits a day, meals on wheels, and daily (now twice daily) visits from me (I live very close). The last 2 years have been a bit of a rollercoaster, doing all I can to keep Mum and Dad together at home. This week, I have arrived at their house to find compost bin emptied outside the front door, the key not working to lock their door from outside, blocked toilet, food all over the carpet, tv knocked over, Mum's jewellery (wedding ring) discarded, house boiling hot (heating on), Mum's hand very bruised and complaining of a sore arm, mum stooping forward earlier in the week and generally out of sorts. Dad also more confused and less able to understand and deal with things (communication compromised). Although none of these is the end of the world and not necessarily out of the ordinary (relatively speaking), I'm feeling overwhelmed at the relentlessness of trying to keep it all together for them.

The challenge is that mum would not be able to look after herself and as such could potentially settle in a care home, but dad is not ready for that, and equally not able to fully understand Mum's needs......Help!

Not sure there is an answer to this,but any thoughts, comments etc most welcome! Gx

 

[chick1962]

Hello Georgina and welcome. I have no advice as we are not in this position yet but didn't want to read and run. Hopefully someone will come along with advice . It's a difficult situation but would sheltered housing work for your parents ? Big hugs xxx


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[onlyme1]

both parents

Hi georgina, my mum has vascular dementia and my dad has alzheimers. When they went into a care home together nearly 3 yrs ago now, mum understood and wanted to go but dad was very clear that he didn't need or intend to go. They went in for a 4 wk stay (with the possibility of never returning home), and stayed. Dad regularly asked when they were going home and I kept skirting round the issue. Then I realised it was fairer, if tough, to just say ''this is your home now, you and mum are staying here'' and he then settled. They have a lovely double room with their own bed etc, he still gives mum a goodnight kiss. Georgina, I would begin to look into a place where they can stay together. X

 

[Georgina63]

Hello Georgina and welcome. I have no advice as we are not in this position yet but didn't want to read and run. Hopefully someone will come along with advice . It's a difficult situation but would sheltered housing work for your parents ? Big hugs xxx


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Thank you. Unfortunately their needs are beyond what sheltered accommodation would offer. Looked at homes locally earlier this year and will now continue the search as this seems like the inevitable outcome. Just can't picture Dad in a home but need to come to terms with this I guess. Thanks so much for your reply, it's much appreciated. Gx

 

[Georgina63]

Oh Georgina, how very sad to hear that both your parents have AD. I am not surprised you are finding it so hard to keep things together for them both. To have one parent with dementia is difficult enough but to be caring for both of them, with different symptoms and stages to consider must be asking the impossible of you. Who is caring for you in amongst all of this and how long can you keep this up for, sweetie? I do not have enough experience of care homes to advise you, but my first thought is would it be possible for them to go in to care together? This may depend on whether they are self-funding or LA funded, because the situation will be very different depending on which category they fall in to. Hopefully, someone with more experience of residential care than me will be able to advise you. Wanted you to know someone is thinking of you and hoping that a solution will be found to help both your parents and ease the strain for you.

Thank you! They would be self funding which will help our options and we did start to look at homes earlier this year and will revisit now as I can't see how the current situation can be sustained for much longer. Whilst the respite fortnight worked it also highlighted the challenges of caring for a couple with differing needs, but this will have to be tackled. It's complicated! Onwards and upwards! Thanks so much for your reply. Gx

 

[Georgina63]

Hi georgina, my mum has vascular dementia and my dad has alzheimers. When they went into a care home together nearly 3 yrs ago now, mum understood and wanted to go but dad was very clear that he didn't need or intend to go. They went in for a 4 wk stay (with the possibility of never returning home), and stayed. Dad regularly asked when they were going home and I kept skirting round the issue. Then I realised it was fairer, if tough, to just say ''this is your home now, you and mum are staying here'' and he then settled. They have a lovely double room with their own bed etc, he still gives mum a goodnight kiss. Georgina, I would begin to look into a place where they can stay together. X

Thanks, sorry to hear about your folks though it's comforting to know of similar scenario and that a home can work. I've battled up until now (with myself, sister etc) as this seemed more daunting a prospect than keeping them at home, but I don't think we are far off now. I feel dreadful and quite distressed about this, difficult to properly express the emotions but can't see an alternative that is now manageable. Thanks again. Gx

 

[fizzie]

It might be worth looking at extra care or flexicare housing. In our area we have this run by the local authority but allocated on the basis of need so doesn't exclude people who own their own homes. The big advantage is that there is a care team on site 24/7 and people have their own flats. It could possibly be an interim solution?

 

[Georgina63]

It might be worth looking at extra care or flexicare housing. In our area we have this run by the local authority but allocated on the basis of need so doesn't exclude people who own their own homes. The big advantage is that there is a care team on site 24/7 and people have their own flats. It could possibly be an interim solution?

Thanks fizzie. I'm going to see if we can get extra visits during the day and revisit local care home options. Mum couldn't look after herself at all and Dad's skills are diminishing, and he often lacks appreciation of mum's needsso we are looking at a complex mix of care needs! Gx

 

[Georgina63]

Today's dramas!

Arrived today ahead of the chiropodist to find the toilet overflowing (full of poo too!) onto carpeted bathroom, as an ornament had been put in the cistern and was jamming it. TV (bought 3 weeks ago) overturned and now not working with screen broken. Serious tension in the house with Dad angry with Mum and ice versa.
Mopping up bathroom floor and trying to unblock toilet and keeping distance between them.
Mum crying with chiropodist though this is needed to make her more comfortable......

2 hours later, both had lunch, both asleep and snoring on sofas, husband picking up new tv on way home and I'm hoping all will be forgotten on waking. Just another normal day here........!

 

[Shedrech]

oh my Georgina63
that's really not good
well done on pacifying and tidying up
I think, though, for your mum's welfare it's definitely time to revisit the care homes you think might be suitable for her - it reads as though they need a break from each other - and with your mum taken care of somewhere that will meet her needs, your dad may be able to relax a little so that you can assess his needs
so easy for me to write ...
much sympathy and best wishes

 

[Georgina63]

oh my Georgina63
that's really not good
well done on pacifying and tidying up
I think, though, for your mum's welfare it's definitely time to revisit the care homes you think might be suitable for her - it reads as though they need a break from each other - and with your mum taken care of somewhere that will meet her needs, your dad may be able to relax a little so that you can assess his needs
so easy for me to write ...
much sympathy and best wishes

Thanks shedrech - we can only do our best! Going to revisit one tomorrow. Both adamant they want to stay together, so our search continues. But you are right, a move would now seem imminent as other options just not sustainable. Very sad. Gx

 

[chick1962]

Thanks shedrech - we can only do our best! Going to revisit one tomorrow. Both adamant they want to stay together, so our search continues. But you are right, a move would now seem imminent as other options just not sustainable. Very sad. Gx

So sorry to read that Georgina , must be very difficult for you . Hoping you will find something workable for your parents but do agree more help is needed and one can only do their best . Big hugs xxx


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[Georgina63]

Latest

Thanks all,
Making progress of sorts, but maybe one step forward two steps back. Availability in the care home that was top of my list should the need arise, good visit there earlier. Thinking about possibility of a move initially for mum 'sold' to dad on basis that mum needs more help to be looked after and get better. He could visit daily. Not ideal as we always wanted to keep them together, but big concerns over his current ability to settle in a home (based on experience, current needs and recent stay in respite). Sibling lives 130 miles away and is adamant they should move to care home nearer to where sibling lives. What a mess! Gx

 

[Shedrech]

bit of a mixed bag there Georgina63
good that your chosen home has a room available
not so good about it being 130 miles from sibling

strictly though, it's your dad's call and he will want his wife close to him, that's just (to me) an obvious practicality
though I know what it is to be dealing with a sibling who sees things very differently - does she at least grasp that your mum needs support now and that it would be unfair on your dad, and on her, to wait - is she voicing this suggestion to your dad or just to you? maybe you can 'sell' it to her by suggesting that she research in her locality but in the meantime give your dad some respite and go ahead with the home you have found otherwise you'll lose the place (then hope that she'll back off when your mum is settled)?

here you go pacifying again

best wishes

 

[Georgina63]

bit of a mixed bag there Georgina63
good that your chosen home has a room available
not so good about it being 130 miles from sibling

strictly though, it's your dad's call and he will want his wife close to him, that's just (to me) an obvious practicality
though I know what it is to be dealing with a sibling who sees things very differently - does she at least grasp that your mum needs support now and that it would be unfair on your dad, and on her, to wait - is she voicing this suggestion to your dad or just to you? maybe you can 'sell' it to her by suggesting that she research in her locality but in the meantime give your dad some respite and go ahead with the home you have found otherwise you'll lose the place (then hope that she'll back off when your mum is settled)?

here you go pacifying again


best wishes

Definitely a mixed bag to say the least! To be fair she's always thought mum needs support, which is true and up until now I strived to enable that support in their home, along with an acceptable but real level of risk (not decided alone, but part of wider care and support services team), whilst she would have moved them into a home. I think she is voicing opinion to Dad that near her would be good. The challenge remains that M&D have differing needs, and officially Dad lacks capacity to make decisions for their wellbeing, that said we are meeting on Friday, to discuss with dad with SS here to help mediate. In the meantime, sibling has told me she doesn't trust my judgement. Whilst I've always believed they should remain together at home for as long as possible, this has also considered that a move into a home might well happen at some stage. Based on the situation at present, the balance has tipped we have to find the best solution which could mean Mum goes first, followed by Dad, or they go together......tbc........Gx