1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

How did you let her get so bad?

Discussion in 'I care for a person with dementia' started by DaveM, Sep 24, 2016.

  1. DaveM

    DaveM Registered User

    We had an "invisible" distant Cousin from the other side of the family show up uninvited a few days back. After coming in and talking to my Mother (While the nurse and carer were both trying to work with her already) for a few minutes, she pulled me aside and hissed, "How did you let her get so bad?" I was a bit stunned by the question.

    My Mother was well fed, clean, freshly showered, well hydrated, free from bumps and bruises, decently dressed, sitting in a clean, safe room and sitting on a fresh, dry chair pad. She has no skin breakdown, her blood pressure is under control and all of her medications are properly administered. I said, she's doing quite well and the nurse agreed with me, telling me to keep doing what I was doing, and she would see about slight medication adjustment. The cousin replied, "She doesn't even recognize me, and she can't string three words together! How can you say she is doing okay?"

    I explained the type of dementia she is suffering from (Vascular) and how er chemo from the cancer created some confusion and added to the circulation problems. I told her about having to watch her 24/7, lift her on and off the toilet a dozen or more times a day, cooking three meals from scratch to maintain sodium and cholesterol levels, coordinating all of her medical care with four specialists, arranging Physical, occupational and cognitive therapies, doing her exercises with her on the days she didn't have therapy, taking her out to social engagements. trying to keep her entertained and involved at home dealing with the extreme insomnia at night and all of the other things it took to keep her healthy. Unimpressed, she replied, "Well, I never would have let her get that bad!"

    What I said was something to the effect of, "I'm sorry you are upset by her mental state, but we have done all we can to slow her decline as much as possible and keep her as safe and comfortable through this whole mess."

    What I really wanted to say was, "Okay superwoman, don't let the door hit you in the butt on you way out!" :p The Hospice Nurse thought she was lucky not to have a size 14 footprint on the back of her dress.

    How many of you have felt, at one time or another, you, as a caretaker, were being held responsible for your loved ones disease? This dimbulb was pretty extreme, but I have felt the same disappointment from others lately. Most of them start out with something like, "If you had given her this miracle herbal treatment that my Chiropractor's wife sells out of her house, she would be doing better now." It seems to be people who are very disconnected from the daily routine of our lives. Most of the people who are even remotely involved with us are grateful to see that she is still in good spirits and fairly pain free.

    As I said in an earlier thread, sometimes I would appreciate it if the "Invisibles" were just a little bit more so!
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,048
    Merseyside
    I hope the silly moo doesn't show her face again!
    You're doing an amazing job with your mum.
     
  3. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    #3 Chemmy, Sep 24, 2016
    Last edited: Sep 24, 2016
    Oops, duplicate post.
     
  4. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    My dad's younger brother never made the trip from Scotland to England in the forty-odd years we lived down south, although we often visited them.

    When Dad died, uncle J wanted to come to the funeral but I told him - politely - not to bother as I knew how furious my dad would have been.

    I suppose what I'm saying is that some relatives aren't worth your time and energy, and your cousin deserves to join the ranks of the 'long-lost' after crass remarks like that. The hospice nurse was right
     
  5. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    1,085
    Brazil

    She really deserved. She was offensive to your mother in front of her.


    There is a long list of miracles we could have done. I usually said on a polite way that it was done and didn't worked. ( tea, drugs, fruits, gym, puzzles...). And then I was used to said that on same way you don't expect someone with a broken femur run, you shouldn't expect someone with a terminal brain disease speak or recognise someone insignificant as her.

    You are a superhero. You are right keeping your mum comfortable and pain free.
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,059
    Toronto, Canada
    I never cease to be amazed at how arrogant and thick people can be. This cousin obviously doesn't understand disease process. Ask him/ her how they would prevent cold symptoms once a person has a cold. There is disease progression which we can't do anything about.
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    5,748
    Female
    Scotland
    Dave I am inclined to think that people who are that obtuse and insensitive have a mental health issue themselves. When you see how carers struggle, criticism is so out of place.

    Most people who hear that my husband has Alzheimer's immediately say "How hard for you". This is because almost everyone nowadays has some experience of friends or family caring for relative with this damned illness.

    We know you're doing sterling work for your mother.
     
  8. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    #8 sleepless, Sep 24, 2016
    Last edited: Sep 24, 2016
    My husband was diagnosed in 2003 and I have worked very hard to maintain his naturally cheerful and pleasant outlook on life, always emphasising the good and downplaying the not so good.

    Sometimes just one remark from someone devastates me as it seems to undo so much that we have achieved. Recently a visitor sitting close to my husband turned to me and said "You know he's not going to get better don't you?"

    Leaving aside the obvious insult to my intelligence and experience hard won over the past thirteen years, the effect on my husband was like a knife in my heart. He had his eyes closed but his face changed. I redirected the conversation, and when the visitor had gone I told my husband a 'love lie' several times over, saying that X was talking a lot about someone else, who is very old and poorly in hospital. I was trying to erase the negative feelings the visitor left him with. I think it worked, aided by his memory issues of course, but when things can come and go in his memory as they do, I hate it when negative incidents occur like the one above.

    I sometimes think I should have cards printed saying 'H has Alzheimers'. His hearing is not impaired. Please NEVER assume that he cannot understand what you are saying.'

    There is so much to contend with when caring for someone with dementia, and it's awful when what should be a good thing, ie a visit, becomes another problem.
    You have my utmost sympathy.
     
  9. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    Dave you did extremely well to not strangle her like I might've :D

    Keep going, you're doing brilliantly xx
     
  10. malomm

    malomm Registered User

    A lot of our invisibles just simply don't or won't understand what dementia/AZ actually involves, or how it affects the PWD. My reaction to a couple of similar relatives is eff off and stay away. I don't do polite.
    keep smiling,
    malomm
     
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    It's like the very occasional visitors who used to come to visit my husband and would say to me "Are you sure he's that bad? He seems fine to me!" when they had spent a maximum of ten minutes with us. And after they had left, my husband would breathe a sigh of relief, and say "I thought they'd never go! Who are they, and what did they want?" - and these would have been people he had known for years! But my husband always presented very well, would direct the conversation himself (in the early days) and as long as he could do that, so he could talk about things he knew - unless you spent a long time with him and he let his guard down, you'd never see the cracks.
     
  12. WestCountryGirl

    WestCountryGirl Registered User

    Jul 27, 2016
    95
    DaveM

    Haven't experienced the 'how did you let them get so bad bit' ... yet, but have experienced as LadyA says that 'they are obviously forgetful but otherwise really good'.

    I do believe that unless you experience this dreadful disease that you really don't have a clue. It is only on this forum that you get the reality.

    Although I try hard not to, what happens in the future will cross my mind. Many things: if Mum is scammed out of ALL her money, if Mum ends up in a grotty care home, hollow words of sympathy at her funeral.

    There are people out there (family, friends) who all give the impression that they care but ask them for help and you can't see them for the dust trail behind them.

    We can see these things, they are blatantly staring us in the face, but either others can't or won't see.

    Everywhere I turn, I hit brick walls. This week I contacted a local Advocacy Service. Their aims are: independent advocates help to ensure that rights are upheld and that peoples’ views, wishes and needs are heard, respected and acted upon.
    Advocates take action to help people say what they want, secure their rights, represent their interests and get the services they need.
    Advocacy promotes inclusion, equality and social justice.
    We help people with learning dificulties, long term health conditions, cancer, NHS complaints, dementia or memory loss as well as their families, carers and support staff.

    Brilliant, I thought, get an independent person in while Mum does have some capacity for saying what she wants for the future and they would help BUT my Mum has to be the one calling them in (unless has been deemed to lack capacity). Well, I have been trying for two years to encourage my Mum to do a 'living will' and she just says she will do it when she needs to. I said that Mum agrees to anyone 'cold calling her' (rogue traders etc) so am sure that she would agree to see them, but no, they can't do that.

    It is so wrong, the people who can help always have an excuse to not help, the people who are after scamming can carry on regardless of anything and will not be stopped.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Ive been getting very cross recently with a "use it or lose it" brigade. There is the very strong implication that the reason that skills are being lost is because they havent been using them. And the reason that they havent been using them is because they havent been stimulated properly :mad:

    Im afraid my response was a curt, "when you are talking about dementia you are going to lose it anyway - whether you use it or not!!"
     
  14. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,720
    Male
    Bristol
    With OH daughter never listening, but always happy to lecture on whatever she heard on telly, and my mum telling me I'm part of the family without ever bothering to ask how OH is doing I sympathise completely with the size 14 on the derriere approach.
    Keep up the god work Dave, and don't listen to numpties.
     
  15. irismary

    irismary Registered User

    Feb 7, 2015
    499
    West Midlands
    Dave you are clearly doing a superb job and I don't think i would have behaved as well as you did with your cousin. I think I would have blown a fuse. I get the "oh I understand I've been on a course", well no they ****** do not understand. I am so low on the family pecking order I have given up on them but keep quiet so I can keep the little bit of help I do get when I ask - its NEVER just offered. And its minimal. Hey ho.
     
  16. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    384
    Monty Pythons Terry Jones has dementia and he couldn't give a speech recently because he has lost the abilty to speak.

    Heres a man with such a talent for language and comedy and life in general and he has dementia. Some of the best brains in the world have it. So this use it or lose it **** is not going to help anyone.All is does is blame the person who has it or the carers/family and that isn't fair.
     
  17. MollyD

    MollyD Registered User

    Mar 27, 2016
    1,696
    Ireland

    I second this. You're marvelous.
     
  18. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,029
    Female
    Chester
    Sadly this seems to be propagated by some that should know better, alot of effort seems to focus on very early stages, when I realised my mum had dementia(hostess mode and my ignorance), she had lost so many abilities I assumed she must be mid stages, boy was I shocked to realise she was (and still is) early stages, as she was way past the use it or lose it stage.

    Dave, I would have spoken my mind and told them that they didn't know what they were talking about, and told them that the statements they were making were extremely insulting to both of you. At least you had supportive people present.

    She would have had what for from me for daring to interrupt, and the disrespect she showed for the nurse and carer's work as well.

    A big pat on the back for being so restrained.
     
  19. SisterAct

    SisterAct Registered User

    Oh The Invisibles!!
    Such an apt name for them as that's what we should do, just forget they are there as in 'Dementia World' we have enough to cope with.
    When I told all the family how bad our Dad was, one of my cousins said, "would it help if I visited him?" She has never visited him or our Mum even when they were in good health.
    My polite answer
    "NO"

    Dave you are doing an amazingly and you will find out now who your REAL friends are. I know we did.
    Take care
    Luv
    Pol x
     
  20. Kjn

    Kjn Registered User

    Jul 27, 2013
    5,835
    I had some relatives of OHs here today , know my dad, came to be nosy asking re dad...
    One comment of "oh hows dad" followed by " oh it's difficult isn't it" :eek:

    My extremely curt reply of "you have absolutely no idea how difficult any of it is , no idea how it feels , no idea at all unless you live it" seemed to get through backed by my OH.
    They wernt here long.
    Due to see them next week, bet they keep schtummm next time:D
     

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