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Too many rocks and hard places to choose between

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

  1. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    806
    I take exception to that.An elderly person who is at breaking point caring for their spouse or an adult child trying to juggle a job and their own family with caring for an elderly parent should not be made to feel guilty and believe me they are.Why is dementia different from any other illness?I wouldn't be expected to care for someone with cancer.
     
  2. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    Happy New Year, everybody.

    I've just re read your original post, Janey, and hope you haven't minded us going off at a bit of a tangent, but I hope the debate has shown you that there are pros and cons on both sides and a one size fits all solution is impossible. You have to decide what is right for you, your sister and your parents.

    Fizzle's suggestion of sitting down with your dad and trying to get him to open up is a good one. Living with your mum 24/7 must be pretty trying and perhaps he feels like my neighbour deep down, whilst keeping a stiff upper lip in front of family and friends. My neighbour knows she can be totally honest with me as she was there when I used to offload about my mum and she knows that any negative feelings she admits to are unlikely to shock me. And you must be equally honest with him about how much care you and your sister can commit to, now and in the future. Personally, I feel your mum's views are secondary to your dad's, (as the primary carer) in this instance. She doesn't appear to have the capacity to make an informed decision.

    Your role is to slay the guilt monster that is likely to be sitting on your dad's shoulder. He needs to know that you wont think less if him if he admits it's getting all too much. My dad, after 50 years of a very happy marriage, said as much to me back in 2003, but I didn't know then what I know now and I wish I'd handled it differently and really listened. He became suicidal which is why I'm such a fervent advocate for a carer's right to say 'I can't/don't want to do this any more'.

    Anyway, those are just a few thoughts. Feel free to disregard them if they don't apply to your situation :)

    I wish you well in whatever you decide.
     
  3. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    It is interesting reading all the comments and different opinions and I think your title Janey "Too many rocks and hard places to choose between," says it all. Everyone's situation is different and what suits one may not suit another.

    As I have already said, my mother refused respite and day care centres. She actually became very aggressive and violent to staff when she went into respite, even though she had agreed to try it. She lasted about 2 hours before her husband had to collect her. When she finally went into the nursing home permanently her memory was so bad that she didn't really know what was happening.

    I agree that it is a good idea to try respite for a few days at first to see how everyone in the family adapts to it. Your mum may well be different from mine and take to it straight away and your dad may find it a blessing. Small changes at first is probably the answer.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Well that is strange - I actually wasn't a full time carer I supported my Ma to live independently and I was lucky that it worked with a huge amount of juggling - at the same time I cared for my husband who had terminal cancer, two young teenagers and held down a part time job. SO I would be expected to care for someone with cancer as are many many thousands of people around the country.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I agree totally with Chemmy's take on this - it is the support that is central to the whole situation
     
  6. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    806
    Apologies,I spoke out of turn.I do think though that many people are guilt tripped into carrying on caring for a loved one with dementia to the detriment of their own health.I suppose the difference is that dementia is very much a long term condition,in my father's case 12 years now.Caring for him at home certainly ruined my mum's health.I suppose the point I want to make is that bring at him is not always the best option,I posted earlier about the no of weeks my parents spent in hospital,apart from anything else the strain on the NHS is unsustainable.I'm sure they were able to stay out of hospital subsequently because they were getting the right care for them.Anyway I'll shut up now,once again please accept my apologies
     
  7. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    My FIL cared heroically for MIL with dementia and totally compromised his own health, refusing to have recommended treatment because he wouldn't leave MIL and would not accept any other help or even let us help much. In the end, we lost him two weeks after MIL died, he was just totally shattered, and we had a joint funeral service. We did what we could, but we lived 200 miles away and both had demanding full-time jobs.

    So while I have great admiration for those who sacrifice everything for the sake of the PWD, I personally feel that the carers' lives as just as important and have already told my only daughter that I don't ever want her to compromise her own family and future for me.
     
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    I've had that conversation with my daughter too.

    Funnily enough, my parents talked to me about this well in advance of Mum becoming ill, and I think I was able to make difficult but guilt-free decisions about their care because I knew I was doing it with their blessing.
     
  9. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    806
    I couldn't agree more although my preference would be a trip to Switzerland while I still have capacity.My feelings only,not suggesting mass euthanasia.My Mum was 12 years younger than my Dad,she cared for him for many years,she died in September aged 82,Dad still here and will be 95 in March.I've no doubt at all that the stress my Num suffered contributed to her failing health.We all deferred too much to Dad's needs and,wishes to her detriment.I would do things so differently if I had the chance.
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,747
    Yorkshire
    Response to janey106

    Hi janey106
    I’ve quoted above parts of your initial post, just to help me think – and to maybe pick out for you the key issues you’ve raised.
    I believe you have an appointment with your mum’s consultant on the 4th, so please do take a copy of your post with you as a prompt of things to ask about eg her eating, late rising, depression, her feelings of living with your father – and all the issues from your other posts. I appreciate how worried you must be for them both, so please do be totally upfront with the consultant, don’t let your dad play things down.
    I wonder what meals your dad is making? Not being rotten, but I know my dad’s cooking left a lot to be desired. Maybe think of buying suitable ready meals (and have shopping ordered online and delivered if this will help YOU) or having a firm regularly deliver. If your mum is happier with sweet things, there are lots of lovely puddings too. Dad enjoyed M & S meals, they are actually rather good.
    If your dad is now accepting that they need more support, are you able to contact SS/Adult services for a needs reassessment and have care in the home to help get your mum up, washed, dressed and breakfasted – and maybe at lunch and tea time to help with meals? It may well be that someone else going in will perk her up a little – I know dad enjoyed having his carers ‘fuss’ over him and they chatted while they supported him. A cleaner might help too – again, for company as well as to take the chores away from your dad. Even consider some day care, to see how your mum takes to being looked after out of her home and to give your dad some breathing space.
    I wonder who suggested you consider a care home placement? Maybe start visiting some so you get an idea of what is available – and you may well discover that life there is not anywhere near as bad as you fear. It’s possibly a wee bit extreme, but given your dad’s health check, might they move in together, in separate rooms, so their day to day living needs are taken care of and they are still together?
    It certainly seems that your dad’s health needs are also to be considered in any move. Are there any assisted living homes in your area? That way your mum and dad will be more supported, and if your mum then enters a care home, your dad will still have more support already in place, rather than being left on his own in new flat.
    Your mum does seem to appreciate that something needs to change: it is heart-rending to read that she fells they are exhausted with each other; that does have the ring of truth, though. And also seems to be her way of ‘giving you permission’ to make changes.
    Sorry if any of this is off track.
    Your family have some big decisions to make this year – I wish you all the very best.
     
  11. janey106

    janey106 Registered User

    Dec 10, 2013
    139
    Thank you for all responses to "too many rocks and hard places".

    I really appreciate so many thoughts, ideas and shared experiences, successes and regrets. I fear I would bore you with the details but since my original post so many changes keep occurring including Mum being vile verbally to me, brandishing a pan at me and raising it to hit me (similarly large glass sweet bowl and a vase) throwing things in paddy at me but less harmful, then crying down the phone to say sorry, then telling Dad a pack of lies about what I have allegedly said to her, full scale anger at me and Dad in which she then thumped me, denied it and said I hit her, refusing tablets but goes out for lunch with old friends and positively performs for them like butter couldn't melt in her mouth, within seconds of me taking them home she is screaming like a banshee again about hating looking after her Dad (actually husband). Has bruised both her hands badly because of the force she has banged a table in anger.

    Dad nipped out this morning for half an hour (he told her whilst I was on phone to her and left her a message by bed), returned to a mouthful of abuse, she has thrown milk bottle at him, vile verbally etc. In amongst all this I need to stress Mum still functions fine in terms of dressing herself, making bed, making a cup of tea, toilet etc. Dad rings me in tears again, can't do it any more. Heartbroken she could be so caring with elderly friend they saw for lunch but never utters a word of caring for him. They have had a great life together until 4 years ago, financially very comfortable, can afford care/R's etc and have cleaners and someone going in every week for an afternoon ( 'housekeeper') to allow Dad to get out to meet with friends knowing Mum has company. I've been up again and Mum just taken her tablets (5 hours late), vicious with me but Sistr calls to see her with a friend who has known Mum some years and again, she becomes this timid, gentle, reasonable, lucid woman. Dad saying he is going to be honest with Consultant and tell him he just can't care for Mum any more; he is physically exhausted, doesn't want just respite, there is no conversation/care from her any more, she is abusive, violent but then totally denies it. Carer's coming in 2 or 3 times a day won't help him as it is happening all hours of day and night now. Just to clarify about food, Sister and I are both good cooks and ensure they have meals home made in fridge to reheat, or M&S goodies as standby, Mum just won't eat them except when brought to our homes where she then eats. Sorry I'm rambling but this is my head, like a washing machine just turning it all over. Mum in meantime insists Dad can "f*** off' as she isn't leaving her lovely home as there is nothing wrong with her and she can look after herself. I feel like I want to call her bluff and just remove Dad for a few days and withdraw all our care ......No, I won't do it. I keep telling myself it's the disease/depression/personality mix but it is cutting to the heart when she can be so nice to others and the rest of us are bending overpack wards to make her life as good as we can.
    I am going to write all of this down again, chronologically, and give it to the Consultant, he just has to know the truth but I will get Dad to okay it first. He feels so bad but knowing he has heart problems again, he just can't take any more of this brain and heart bashing roller coaster.
    Thank you again, I will update after consultant visit.
     
  12. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    Thank you for the update, Janey.

    In those circumstances, I would be looking at a care home too. Your dad deserves better than this.

    Good luck and keep us posted
     
  13. ElizabethAnn

    ElizabethAnn Registered User

    Jan 4, 2014
    189
    North Hampshire
    24 hour Live in Care ?

    Janey,
    Another option may be 24 hour live in care ?

    Mum has Alzheimer's (stage 5+) and often thinks that Dad is her Dad too.

    Dad (who was her full time carer) now has no mobility, is very frail and has possible early Vascular Dementia. We tried them in a very nice care home for 2 weeks respite - neither liked it.

    So, went for 5 days of a 24 hour live in carer (ostensibly for Dad) back in February 2015, which we kept extending and is still in place today.

    The live in carer does everything for them and acts as a "buffer" when Mum's AD makes her nasty.

    Mum & Dad are self funding and whilst it's not cheap (about £1000 per week for 2) we do consider it to be good value for money and fortunately Mum & Dad have the savings & pensions to keep this in place for a few years.

    We took time to specify exactly the type of person we thought would suit Mum & Dad and the care company have so far not let us down.

    This allows my sister and I to visit and spend time just chatting - and usually Mum is on her best behaviour...

    Hope I'm not throwing yet another choice into the mix to confuse you further...

    I wish you all the best for 2016

    Elizabeth.
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,747
    Yorkshire
    My gosh janey106, what a right old pickle!
    I'm so glad you have been able to use posting here to clear your thoughts and air all your concerns - and really pleased that you and your dad are of a mind as it will make it 'easier' for you both, with your sister, in moving forward with your mum's care. She badly needs much more support and I'm sure you all will be able to make that clear to the consultant and to SS/Adult Care.
    I'm with Chemmy; it would seem that, sadly, your dad needs some space between him and your mum, and she needs the support a care home will provide.
    I wish you all well.
     
  15. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Oh dear! Things have certainly progressed very quickly Janey.

    I think you are right to make a record of everything in chronological order and give a copy to the consultant.

    Something needs to sorted out urgently for the sake of your father as well as your mother. Let us know how you get on. Good luck.
     
  16. janey106

    janey106 Registered User

    Dec 10, 2013
    139
    Sorry I didn't do an up-date sooner but each day brings a different turn. Mum continues in much the same way but I'm convinced she has more capacity than she sometimes let's on. We saw Consultant on 4th, he again told Mum she has dementia when she questioned him time and again and he strongly suggested Mum and Dad needed to be looking to moving into supported accommodation. Been trying to get them on board with this and presenting some options. We are totally sensitive to this being very difficult as they have lived in their home 31 years but it is now a gilded palace - bungalow but with 16 steep stone steps to get in it, at the top of a huge hill with no-one passing by and only able to go anywhere by car. Moving on with this when Dad's health check found he had serious heart problems again, GP took him off a 'noxious' mix of medication from previous GP and told him he was at very high risk of another stroke. In space of last week Dad fell badly three times (mini TIAs suspected) then on Saturday actually had a small stroke - ambulance/hospital etc. Now home but feeling weak and vulnerable and remains at high risk of another. He can't drive either and maybe never will again as his mobility/fragility is so poor and DVLA want him assessing. Looking for suitable care options - but Dad keeps moving the goalposts (to be with Mum, not with Mum, stay at home, then saying wants to move). Mum went on another rant and screaming tonight, throwing things at him and me, tried to storm out in the pitch black so I ended up having to hide keys and her glasses to keep her in, but then an hour later knew what she had done and apologised (would someone with dementia have this insight - I really don't know?). Put in an application for one local care facility that can offer best of all worlds, independent living with extra care (and dementia specialist units if needed later). Going back to Consultant tomorrow to ask for private meeting with him as we are just feeling lost about what is best for Mum and whether her issues are just as much 'mental illness' as dementia and if so, can 'ordinary' care facilities manage her temper, aggression etc. Going to ask for Social Care assessment but I know she can and will 'perform'. What a maze. Dad just can't and doesn't want to 'manage/look after her' any more.

    Thank you for ideas about 24 hour care, suggested that but Dad refusing and Mum is already pretty awful to the housekeeper who is now coming 2 afternoons rather than one. Keeping it as an option if Dad's health deteriorates again before we can make longer-term changes. Truth is, Dad just wants another big stroke and to not be here. Heart-breaking.
     
  17. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Fingers crossed that the Consultant offers helpful advice and a speedy way forwards. Your poor Dad!
     
  18. janey106

    janey106 Registered User

    Dec 10, 2013
    139
    Calm before another storm?

    Last time I posted Dad had just had another minor stroke; Mental Health worker went in with Social Worker to try and move things on towards care options (chocolate fireguard springs to mind). I Got as far as persuading Dad to have pendant alarm, GP made more changes in medication, Dad had another small stroke last week and in hospital a week. Found lovely respite option for Mum as didn't know how long Dad would be in hospital and he needed rest and I needed to work. Mum understood, agreed, went through assessment beautifully, Care Manager arranged for us to take Mum at 4 pm that day; Mental Health OT agreed to be there to help. OT didn't turn up or return calls, Care Home Manager finished work at 3pm so not there and Senior Carer knew nothing about it! Persuaded Mum to see her room, she turned from little old lady into horrible obscene, violent, angry abusive woman. I had never seen her this bad and first time she has shown this side out of the home......She was throwing things at me in the car as we drove away. I know she was upset, worried etc.....but right then I couldn't have cared less. I took her home (after all she copes fine and there is nothing wrong with her....), opened her front door, threw her bags in after her and walked away. I rang the Duty Worker in pieces and she told me to walk away. I did, but my daughter stayed with Mum that night and I had to forgive and forget the following morning and care for her. Brought her to live with me til Tuesday, used up rest of annual leave, rang every care company locally to get extra support in place (Dad undermined it all again this week so passed him the info so he can speak direct with them) liaised with Social Care for short term support and Wednesday ended up in GPs myself with agonising pelvic pain (which I have been ignoring as too many other things going on).
    Dad just wants to wait till he has a major stroke as he says he won't be here in3 months.

    The Duty Worker told me I am not responsible for my parents happiness, health and choices but how do you just sit on the sidelines and watch it fall apart?
     
  19. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    1,085
    Brazil
    Focus. Your mother is getting your attention, but who is in hospital is your dad.

    Your mother throwing stuff. Maybe she needs a review on her medicines. Maybe GP needs to be informed.

    I am glad that Duty Worker didn't used the guilty trap on you. Maybe try again CH. maybe day centre. Maybe a live in career.

    Daughter. Neither she has the duty of care. Her focus must be school ( I am guessing a teenager). SS has the duty of care.

    It seems your father thinks he is on end life. It may be depression or not. Maybe ask for hospice team.
     
  20. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I agree totally that your dad is exhausted and probably depressed (and so are you - exhausted at least) and your mum needs to have her meds looked at. medication changes can make a huge difference. I'm so sorry but I do think that the extra care would give both of them a chance to resettle and i really hope that works out xx
     

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