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Coping with elderly parents – particularly Alzheimer’s Rant

Discussion in 'Personal' started by lindenlea, Feb 2, 2012.

  1. minnie me

    minnie me Star commenter

    Yes I have demolished a whole Buttons Easter Egg and lost myself in some bubble gum TV - normal service almost resumed :rolleyes:
     
    agathamorse and Lara mfl 05 like this.
  2. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh yes. I'd forgotten that was when I probably started watching 'bubble gum' tv. :(Anything to distract the mind. :rolleyes:
     
    agathamorse, install and minnie me like this.
  3. jubilee

    jubilee Star commenter

    My Nana was like that. She had breathing problems and would tell us and her GP that someone must have broken in during the night (and left no evidence of a break-in). The intruder must then have opened up her chest as she slept, damaged her lungs and then managed to sew her up without the surgery being evident!
     
  4. minnie me

    minnie me Star commenter

    Ok .... so phoned my Mum as I do every night. 2 minute call . Obviously she is in a foul mood and feeling very sorry for herself and didn’t want to engage. She had been to the hairdresser quote ‘ that ‘s all I have done ‘ . ... (I know where this is going I thought to myself .:( ) ..I have done my best ‘cheery cheery me ‘ impression but I really do not want to have THAT ‘oh woe is me ‘ conversation again.... Am seeing a friend tomorrow whom I have not seen for nearly a year .....and was going to offer to call with a paper ( it is a big thing to her ) but I have decided against. Sometimes you just have to grasp nettles o_O ( and not feel guilty )
     
  5. marymoocow

    marymoocow Star commenter

    Absolutely! You need to save your sanity and look after yourself too. Don't feel guilty.
     
  6. minnie me

    minnie me Star commenter

    I phoned my Mum to double check a time for an appointment with her tomorrow @ 10 minutes from her home - I was driving . She told me she could get a taxi. Well ...yes I replied this is always an option but I was expecting to take you. You asked me weeks ago . Cue ‘ I don’t want to bother you ‘ ...... which morphed into a negative, complaining rant about litter , swearing , Sundays ( hates them ) immigrants, her health ....30 minutes later ...... I reminded her that she needed to food shop so I just behaved as if the taxi conversation had not taken place . I feel like I am in a battle. (I know I am not the best daughter in the world but I do not deserve this ) .I had to stop myself from saying ‘ is there anything you don’t want to complaint about ?!’ I didn’t ..... but the next time:mad: .... grrrrrrrr .....
     
  7. Lara mfl 05

    Lara mfl 05 Star commenter

    I certainly identify with feeling everything becomes a battle and no you do not deserve this. To be fair neither does your mother. Or anyone to have their latter years 'bighted' in this way.

    Feeling you are not the 'best daughter' is also incredibly common and part of the guilt complex which all of us who care for our elderlies seem to become well acquainted with. I seem to remember on Alzheimer's Talking Point its often referred to as the 'guilt monster'. You are however doing the very best you can, within your own limitations and abilities. It may not be the same as someone else , but we are all very different people.
     
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  8. minnie me

    minnie me Star commenter

    Cheers@Lara mfl 05. I shall calm down in a little while ! Now ... where’s that chocolate?! You would think wouldn’t you that I should be able to rise above / ignore / be more accepting but I feel isolated currently . Son just says yes I sympathise but what I can I do ? and my husband listens but can switch off . My going on and on is me just behaving like my Mum :eek::( oh the irony:rolleyes:
     
  9. JessicaRabbit1

    JessicaRabbit1 Senior commenter

    So.

    My dad has multiple myeloma - was diagnosed coming up for 2 years ago. It is incurable but can be treated. He had chemo and went into remission a year ago. He now has to have 3 monthly check ups. Mum is his carer and they live 15 minutes away. It has been a rocky road but he seems really well at the moment and they seemed to be coping well. Hubby and I have tried our best to find the right balance between being there and also letting them have their independence, because that has always been really important to them. My brother lives in abroad but has been making regular trips to visit.

    Early yesterday morning, I received a FB message from a stranger. My sister in law also received one and contacted me. Turns out my Dad had posted a message on a FB Myeloma board late the night before saying that he was in severe pain and was going to end his life that night. Concerned members had gone through his friends list and messaged us.

    So hubby and I rang my Mum who was at the docs with him. Turns out he had been having severe migraines brought on by the worry of the latest 3 month check up looming. When they got back, I told her we had seen the message - we weren't sure if she had but turns out thankfully he had shown her it. I asked her if they had told the doctor about the suicidal feelings and she said no, they'd just got medication for the migraines.

    Since then my brother and I have both been having really difficult conversations with Mum. Dad is too embarrassed to speak to us. He is not a social media expert and had no idea of the possibility that this could happen. They are both very private people and as with the older generation seem to struggle with the concept that mental health is an illness. Mum has argued - and I agree with her - that she knows him best and there is no need to tell the doctor just how low he is. Her argument is that it was the migraines that made him so low and once these are treated he will be fine. My argument is that the migraines have been brought on by the anxiety and stress of the 3 month check up (she doesn't dispute this) and that it is this that needs to be treated. We actually argued about it today which made me feel awful because we never argue and she doesn't need this.

    I don't know what to do or how to feel. Hubby and I have discussed contacting his GP ourselves and just telling them what's gone on although we know they won't discuss his case with us. I am worried that prescribing him more meds when he has expressed this intention is something that the GP should know about. However, I also very much want to believe my Mum when she says to trust her and that he will be ok.

    And yes, I am very aware of the irony of posting this on sm when it is sm that has brought about this situation. It makes me wonder how often he has felt this way and I have never known. Mum has picked him up so many times in the past - she is probably right to consider herself the expert. But - suicide? That can't be brushed off.

    I don't know how to feel or what to do.
     
  10. Lara mfl 05

    Lara mfl 05 Star commenter

    Ph JessicaRabbit that is so hard for you.

    As to your question
    there is no definitive answer.

    As we often say on here, whatever you feel is whatever you feel and there is no 'right or wrong'. Denying thoughts and feelings generally leads to greater problems, so accepting sometimes uncomfortable thoughts/ feelings can enable one to be able to deal with them.

    Depression can be incredibly common in people suffering life-limiting illnesses and it may be that your father just expressing those thoughts was enough and hopefully he would never actually carry them out. As we were discussing only recently those who succeed in committing suicide as generally those who never give any forewarning or indication and it comes as a complete surprise.
     
  11. monicabilongame

    monicabilongame Star commenter

    Everyone is hyper GDPR-aware these days and no, the doctor will not discuss his case with you.
    However, there is nothing stopping you contacting the GP and saying 'I know you can't discuss his case with me but I think you need to be aware of the following' - and then explaining how low he is because of the migraines/stress of the 3-monthly checks, and that he has expressed suicidal thoughts although you don't think he is about to act on them (if this is the case).

    You can also say that you don't want him or your mother to know that you've spoken to the GP, but at the same time you are concerned enough to do so. His GP will be able to find a reason to discuss it with him/bring up the subject, if he feels it appropriate. That way you have highlighted a concern to the appropriate place.

    It may feel like interfering and intrusion, and at the same time, think about how it will be if you don't pass on your concerns and he does do something under the strain of the migraine pain. Suicidal statements always need to be taken seriously - even if the person is most unlikely to follow through with action - it isn't the life he wants to end, it's the pain and the stress, together with possible underlying depression - and the GP can help with this.
     
    strawbs, emerald52, Lalad and 3 others like this.
  12. cissy3

    cissy3 Star commenter

    Hello.

    Been meaning to post on here for years, but now starting to feel a bit ''end of tetherish''

    In 2014, my Mom had an inoperable brain tumour, and me and Dad were caring for her at home in the end, with help from carers, community nurses (and somtimes from MacMillan bless 'em)

    The moments when my Mom died, my Dad had collapsed, and was lying on the upstairs landing. So I was dealing with him, just as my Mom might have been calling for final words of comfort. I don't know. Fortunately, the District Nurse called shortly after, and I don't know what I would have done without him.

    From then on, to cut a long story short, after many and various illnesses, Dad was given NHS funding (end of life) to live in a home.
    Now the funding has been withdrawn, because he has improved, and seems content. The home is very close to me, and seems ideal.

    Problem is, what happens now? Been waiting for Social Services to advise, but haven't heard anything yet, and there is only a couple.of weeks to go. (Problem may be that he is now in a neighbouring council to the one originally dealing)

    He will qualify for a Nursing Allowance, but even with that, he only has funds for a few weeks, and will need to sell his house, but that's going to be time consuming.

    I live on a small pension, so can't be of help, and my two brothers live so far away, and they haven't got the finances anyway.

    Just dreading that the Care Home will chuck him out. I know it's unlikely, but I'm starting to just worry, worry. worry. about everything. The bureaucracy, the daily visits , the running of Dad's house/bills etc and I'm just so tired all the time.

    Meanwhile, my to do lists are getting longer and longer......

    Thanks for the chance to have a rant, and a mention to Lara for encouraging me to do so.

    Edit: any advice gratefully received!
     
  13. Lara mfl 05

    Lara mfl 05 Star commenter

    Oh cissy, welcome, but sorry that things have got so dire that you need to. But it is good to be able to have somewhere safe to rant.

    Firstly you do need to learn to 'be a bit of a trouble-maker' in dealing with officials in both SS & NHS. Unless you do that things tend to 'get left'. :rolleyes: :mad: We found the only way to get answers was to 'be on their backs'.

    Theoretically the Care Home shouldn't chuck him out, especially if he is going to be paying 'self-funding rates' soon. They can be around twice as much as the current rates the SS will have negotiated with the Home.
    Once SS stop funding, they do pretty much give you a list of Homes and leave you to get on with it, unfortunately.

    Yes if he's self-funding he will qualify for the Nursing Care allowance, which isn't much but every little helps. So ensure that is well in hand.

    I suggest you approach the home directly and explain that although your father will have funds, once his house is sold, these won't be immediately forthcoming and so how do you 'arrange payment' in the interim. From memory the council or SS will 'loan you the funds temporarily and can't refuse, but will charge a hefty rate of interest to be repaid when the house is sold. I'll have to check what the latest recommendations are. It's been a while since my elderlies were I that position as they've all died since. Perhaps, @Sundaytrekker or someone currently dealing with Homes can be of more immediate help?
     
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  14. Sundaytrekker

    Sundaytrekker Star commenter

    My elderly was in rented accommodation prior to needing help so there was nowhere to be sold when she went into care and social services are funding the bit that her pensions don’t cover. I thought , like Lara says, the fees can be paid but secured against the property so you pay back when it’s sold. However, I’d imagine every council could be a little different. Maybe start with the local authority ‘s website for information. They should also have a phone helpline that could find you the right person to speak to.

    Be aware that you may be asked if you are prepared to pay top up fees yourself. Don’t feel guilty about saying no that’s not feasible. If he has a property that should sustain fees for quite a while.

    So sorry that you are dealing with this. I’m currently sorting out MiL’s estate following her death a month ago. No one teaches you about these things until you need to face it yourself. Keep asking.
     
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  15. Lalad

    Lalad Star commenter

    @JessicaRabbit1 Really sound advice from @monicabilongame
    How is your dad today?
     
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  16. monicabilongame

    monicabilongame Star commenter

    Would it be possible to let the house and use the income to pay for the fees?
     
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  17. cissy3

    cissy3 Star commenter

    Oh thanks for that @lara! Edit: and @Sundaytrekker!

    I've just got in from a quick visit (I'm lucky it's so near) and Dad relies on me for a sensible chat about current affairs ...and football (I'm quite up to date with the Premier League these days lol !) Dad hasn't got dementia, and my only criticism of the home is that there is a lack of 'conversational activities', otherwise, they've been great, and I think it would be best for him to stay there, even if it's more expensive than other places.

    I get the impression that you're right about having to 'be on their cases', as before all this, I was going through the process of getting a 'Care Package' in place , just prior to Dad going into hospital.

    I think I'll do that in the first instance. Good idea. I'm sure they must have come across this situation before.

    Another good idea. I get the impression the two neighbouring councils are trying to fob 'the problem' off on each other.

    Dad doesn't want to move back home, as I think he's realised how much better he has been whilst being cared for 24/7 but he wants to keep paying his home phone bill etc as though he doesn't want to take that final step in calling his Care Home home.

    Oh Thanks Monica!

    That seems to be a suggestion on AgeUK sites too. Problem is that the house is very old, and probably would need
    complete refurbishment before letting.

    But it would rent for a fair whack if that was done, I think.

    I just feel so worn down by it all, that I just don't think I've got the energy for it.

    But it has helped to offload on here! (I've dipped in and out of this thread over the years, but kept burying my head in the sand as the situation got steadily worse, and the past couple of years, I haven't even had a computer! Stupid me! There's so much info, but I'm an ostrich!)

    Got to think about Power of Attorney too.

    Sorry! Gone on a bit again!
     
    agathamorse likes this.
  18. primarycat

    primarycat Star commenter

    Others here might know better but my friend whose mum has just had to be moved into a home said there are separate medical and business affairsy-stuff (yes I'm very technical). She didn't get the medical one which caused problems when her mum resisted necessary changes as her mum could mask her needs for a bit in front of strangers.

    Just a thought.
     
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  19. cissy3

    cissy3 Star commenter

    Thanks primarycat.

    Yep, that does ring a bell. Something about two different 'levels' of it.

    Dad's all but handed over his financial stuff to me. (I pay his home bills and stuff for him)

    I think you can print off forms and 'do it yourself' although other websites recommend getting a solicitor.

    (I'm sure there must be information and advice on this on this thread somewhere!)
     
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  20. littlejackhorner

    littlejackhorner Occasional commenter

    Hi @cissy3 .
    I do understand what you are going through. My mother in law has been in this situation for over 18 months. I know it all seems stressful and overwhelming at this point but once everything is organised it will get better. You need to meet with the finance team from your council- social services may well signpost you to them. You do not have to sell your dad's house. The council legally has to offer the option of deferred payment putting a charge on the house. The interest rate is not that high- possibly 2% and it will give you breathing space and time for your dad to think about the decision to possibly sell the house . Any income your dad has will go towards the weekly payment and he should also receive attendance allowance. I strongly recommend you trying to sort out power of attorney whilst he has capacity to make that decision. It will make things a lot more straightforward in the long run. If you have any further questions about this - I feel well clued up after all we've gone through please either post a question on here or PM me. I promise it will get easier. Its just a bit time consuming initially getting things sorted. Good luck.
     
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