Too many rocks and hard places to choose between

Discussion in 'Middle - later stages of dementia' started by janey106, Dec 31, 2015.

  1. janey106

    janey106 Registered User

    Dec 10, 2013
    139
    Not even sure any more if Mum is in middle stages as apparently she has a complex case of alzheimers/dementia/depression and anxiety and we aren't always sure which we are facing. Taken so much comfort, guidance and ideas from TP but feeling bit overwhelmed about what/where/how to move forward. Mum still at home with Dad as main career, me and Sister both at work but each evening usually one of us there for a couple of hours and/or bring them to ours for meals. (Very lucky all live within half mile). Mum now eating lik a sparrow unless actually brought to our homes where she eats a full meal. Rarely up before 1.00pm, says she is too ill, depressed. She knows her brain is faulty because she cannot accept her husband is not her own Dad who died 28 years ago. Also has raft of other dementia symptoms. They live in beautiful bungalow but it is remote from services and they rely on me to do shopping etc with Mum(or without if she won't come) and very little else. A week ago finally got them to recognise they need to consider options for future as Dads driving days are nearly over (very poor mobility in all respects, slow reactions,) and Dad and Mum both agreed to think about selling up if we could find a nice apartment or similar near town centre so they can access shops, social groups etc. The BUT is in the fact that we have been advised to consider moving Mum straight into care as she will struggle with a house move when a care home move may not be that far away. How do you decide when is right when there are times when she is quite lucid, good company (Xmas day afternoon was a totally unexpected joy when Mum was so involved, enjoyed her meal and everything but day after slumped completely) but then totally depressed, suicidal, talking as if 30 years ago. Many of you say it is often a crisis which precipitates a change and that may also now be ahead as Dad just had a health check and there is something wrong with his heart (he says it is just sad and broken). He has already had a stroke and heart attack ..... I jst feel I should give up work ( not financially realistic) and look after them but I know what I deal with now is only the tip of the iceberg that is floating ahead.

    Sorry, know ther are no answers to this, just needed to put our dilemma in writing. We live close so can do things to help make changes but actually making it all happen, whatever IT is, is also going to be a huge undertaking and I don't see how I can do it working full time .... It is crucifying me to think of Mum being in a home when she can have 'good times' and constantly begs not to be put into care. Earlier this week Mum even said she doesn't think she and Dad should live together as they are exhausted with each other ...but then she wanted to ring her Mum(who died 31 years ago). This is so damned sad.
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    My personal view is that I wouldn't move her into a care home because it 'might not be far away' If your dad is going to move to a new place which will be easier to manage in many ways I can see no reason why they can't just both move together - surely that will be better for both of them and you might find mum takes to it completely and if she doesn't then you will have tried and in a few months (but it might be years) you can regroup and think again.
     
  3. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    My MIL has positively thrived, both physically and socially, in the eighteen months since she moved into her care home. She'd been advised to rest when we saw her ten days ago as she had been too busy partying (true, apparently). She was a timid little hermit when she went in....but not anymore:D


    Compared to two Christmases ago, she's got a new lease of life and is looking forward to her birthday party on Sunday (89 years young)

    Could you try your Mum in some respite before the move goes ahead..a little 'holiday' if you like? If you can find a lively enough place, you might find that helps with the depression. Stuck in the house all day with your dad might not actually be that much fun.
     
  4. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Sorry to hear of your dilemma Janey. We can all identify with aspects of your sad situation.

    One thing I have noticed is that you have not mentioned how your father’s feels about your mother going into a care home. He may be her main carer and perhaps it is becoming too much for him, but would he feel worse at being on his own, particularly if the care home is some distance away and he is unable to drive anymore and visit when he wants?

    Would your mother accept going into a care home? It might be worth looking at day care centres and even a spell of respite first to see if she like it. My mother became very angry at the slightest mention of a home and refused respite or even day care centres. When she did finally go into a home the Alzheimer’s was so advanced that she accepted it as being a visit to see the nurse. She was a bit restless the first evening, but the following day it was as if she had never been anywhere else.

    I agree that moving house may be very disruptive and disorientating for you mother and a very stressful situation for your father as well. It may well come to that in the end, especially if your father is on his own, but not a decision to be taken lightly.

    Don’t give up work, either through a feeling of guilt or through pressure from other people or organisations to do more than you are already doing. This is particularly relevant if you cannot financially afford it anyway. It is very fortunate that you and your sister live close to your parents.

    Is there any help coming from social services, or the older people’s mental health team in your area? Sometimes carers can be provided to sit with your mother to give your father a break and they may be able to provide support if your mother needs help washing and dressing. There have been cutbacks but it may be worth talking to them to see what is available. Can your parents afford to pay for any services and help in the home if they don’t qualify for this free of charge?

    You say your Mum’s appetite is very small. Is this due to the food that your Dad is providing? Are meals on wheels available in your area? If not there are organisations that provide nutritious ready meals. There are companies like Wiltshire Farm Foods that will deliver and cater for different dietary needs. They are not the only company providing this service so it might be worth looking on-line.

    Does your mother qualify for Attendance Allowance or any other benefits? It is not means tested and may help to provide extra support. Also if your Mum has been diagnosed with Alzheimer's or dementia she may qualify for a reduction in Council Tax. Citizens Advice will be able to help you on this.

    Only suggestions and every situation is different. Hope some of this is useful.
     
  5. Moonflower

    Moonflower Registered User

    Mar 28, 2012
    775
    Is there an alternative, like "extra care housing" available near you, so that they could stay together but have support on site?
     
  6. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    835
    A care home is sometimes the best option.Our experience for what it's worth.My parents moved from their home of 50+years in July 2013,the previous several years were a constant round of visits by myself,my brother and my sister,cooking meals,cleaning,washing,Drs,hospital appts.We had a rota,one of us would pop in each evening,one on duty each weekend.Our lives were not our own,worse because my siblings who are both much younger than me both had young families,we all had jobs.Dad at that point moderate AD,mum rapidly losing mobility.Many adsptstions to house,wetroom,lift,all just papering over the cracks.They moved to a flat in extra care accommodation.My Dad never found his bearings there,mum's mobility continued to deteriorate.Dad could never find the bathroom but often found his way through the front door,Mum couldn't go after him,her stress levels were through the roof.Carers on site and provided care package but NOT 24 hour care.They were available on buzzer for emergencies eg illness,falls but not for toileting etc,that had to be done during allocated visit.From the November Mum and Dad were repeatedly admitted to hospital,Dad fell and fractured his hip,Mum not eating properly and a couple of TIAs.Dad went into NH April 2014,his dementia is now advanced but he has never been back in hospital.Mum went into care home November 2014 directly from hospital,she sadly passed away in September this year but again never had to go back in hospital.The difference was that they were both getting the care they needed ie 24 hours a day,7 days a week,total care,meals,personal care etc.In my opinion once you start asking if a care home is necessary it usually is.There is no dignity or independence in sitting in a flat waiting to be taken to the toilet or to have a meal put in front of you.With hindsight my parents would have been far better off going straight into full time care.And so would we.My sister died in January 2014,she was just 45.I really believe too many carers sacrifice their own lives and wellbeing.My in laws are now declining but we will do things very differently.Carers are important too,not just so they can continue caring but because their lives are valuable,we only get one!Sorry for long post,good luck x
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I agree that carers are important - a billion times - but some of us want to care, we choose to and although we make sacrifices (many she cries) to do so, we wouldn't want it any other way

    I think people should be encouraged to try things out and see if it works for them and if not there are always alternatives. There is no one right way
     
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    I couldn't agree more with this. There was a BBC documentary on last year called 'Protecting our parents' and it made you weep to see people struggling to remain 'independent' at home. Unfortunately, it's not available on YouTube, atm. So-called 'independence' is often a byword for loneliness and neglect.

    A care home is regarded by some as the worst option in the world, whereas for both my mum and MIL, it proved to be a godsend at that stage in their lives.
     
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I agree in part with all of these posts but what works for some doesn't work for others and we aren't talking about neglect
     
  10. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    My late Mum had lived in her home for about 20 years and fifteen of those years had been living alone. She had moderate Mixed Dementia and also was losing her eyesight due to a cancer and AMD. She was a wanderer, sundowner and needed carers to help with her meds otherwise she forgot to take them. She blamed nearly all of her dementia problems on her failing eyesight. I lived about 10 mins walk away.

    When she started falling as well as generally being unsafe at home, the LA offered a place at an extra care sheltered housing, which in theory should have met her needs, however I pointed out that Mum was ready ( I mean in her own opinion) to go into full time residential care and that it would be unkind to move her into sheltered accommodation for a short term fix since she could not manage laundry or cleaning or shopping or personal hygiene and that quite quickly she would have to learn the layout and routines another residence.
    I suggested that it would be kinder and more practical for her to go straight into residential care, in order to learn the layout while she still had some sight and cognicence and as she was a self funder the LA agreed.

    Mum had nearly three years ( mostly comfortable) in her Care home before she lost her fight last February.

    I guess that what I am saying is that if your Mum is likely to need Residential care quite soon, then in my opinion, I would only make the one move. But it needs to be the right move for the right reasons.
     
  11. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    #11 Chemmy, Dec 31, 2015
    Last edited: Dec 31, 2015
    I was talking generally in relation to the documentary; I appreciate Janey's parents are not neglected. However, if she has already been advised that a care home may be the most suitable option, then she shouldn't feel guilty in going down that route. As you say, what works for some doesn't work for others and many know in their heart of hearts that they are really not cut out to be a hands-on carer and shouldn't be guilt-tripped into becoming one. If it's done willingly, then fine. If it's done under pressure, then that usually leads to resentment.

    I visit my elderly neighbours, both in their 80s, and can see how being a 24/7 carer is taking its toll on her, both physically and emotionally, as well as the frustration of her husband who is the one being cared for. Its a long lonely day from dawn stuck in the house until bedtime for many. They may have 'independence' in the eyes of some but my neighbour would say it sucks. If her husband could be persuaded to move voluntarily into a CH, she's be so relieved.
     
  12. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    I made the same decision about my mum. The assisted living place she was offered after dad died would only ever have been a short term fix at best and I'm not sure she would have coped with the move or fitted in with her memory problems. She moved into the CH whilst she could still interact with the staff and other residents.
     
  13. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    #13 fizzie, Dec 31, 2015
    Last edited: Dec 31, 2015

    I don't understand where anyone is being guilt tripped into anything? Different people are just giving their views and experiences in very general terms - we don't need to try to force views onto others either way - either by making people feel guilty for not doing it or to try to make people who do want to do it feel that they might be somehow doing something wrong. Some people - if you asked them - wouldn't swap those 'long lonely days' for any care home however good it was - some of them have actively resisted others constantly trying to 'persuade' them otherwise. My elderly neighbours are in the same position that yours are but SHE would tell you to get on your bike if you so much as mentioned a care home. They've been together for the whole of their adult lives and nothing would split them up, hard or not That generation, including my own Ma, were real grafters. Guilt tripping works both ways. It is a hard decision for anyone to make - the hardest is making it on someone elses behalf which is why, in my opinion, the key people involved in the decision making are the older people themselves - carer and cared for. Often, in my experience, the carer will lead the way and perhaps conversations together and separately with all involved would give a better guidance. Otherwise as someone suggested early on perhaps a short spell in a good respite would give some clues about how they would both deal with it.
     
  14. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    835
    I've just worked out that in the 2 years prior to going into full time care my parents were in hospital for a total of 38 weeks.After care home no hospital admissions.Speaks volumes as far as I'm concerned.We tried everything else but never again.My health ant that of my siblings suffered,my marriage suffered,my poor mother's health suffered terribly.It's only looking back that I can appreciate how horrendous it was.People are resistant to the idea of care homes for many reasons but in my parents case their home became a prison.
     
  15. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    835
    And that's great if they can 'manage'but not when adult children ARE guilt tripped into putting their own lives on hold and their health at risk.If you rely on other people to that extent you're not really managing.And anyone who says there is no stigma attached to the care home decision hasn't had to make it.
     
  16. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    I remember that series very well and would second everything you say Chemmy. Whatever you might wish, if you can no longer look after yourself safely you are not independent in any meaningful sense. Too often all the support in the world is actually maintaining only the myth of independence not the reality.
     
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I agree with much of the content of many of the posts but the fact remains that there are people who are in care homes for very good reasons and there are many of us who also care for people at home and both ways have their merits and their downsides. I believe that both should be able to express their experiences freely so that those asking questions will hopefully have a balanced view at the end of the discussion on which to make decisions.

    My Mother had a lot (a lot) of support to live independently at home and she felt she was living independently - her perception was the most important thing - it would not tick my boxes for independent living but she was happy and, yes, I was exhausted but that was my choice.

    Caring takes its toll wherever the person is living - for different reasons it is difficult for all of us including the person that is cared for but we make our decisions out of love for the person with their best interests at the heart of what we do and maybe that is the most important thing at the end of the day
     
  18. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    I don't see a problem. Both sides' views are being freely expressed.

    I have huge admiration for anyone who is prepared to be a full time carer, but there are others, like my dad, who fell apart and just couldn't cope and who should be supported too, without feeling guilty.
     
  19. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    835
    I think this is where we differ,I don't think the perceptions of the person with dementia are the most important thing,I think the needs and expectations of the carer are equally important.I have seen my family on the brink,my parents decline continued despite our best efforts.I really feel for anyone with dementia but I don't believe that ruining the lives of cares improves the life of the PWD.
     
  20. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Well there you go, we all come at it from different places.

    I agree Chemmy that everyone should be supported in their decisions and in their lives but the only person who can stop the feelings of guilt is the person with the feelings
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.