1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    I've realized that in a number of ways I've become rather detached from my own feelings about Mum, myself and other things which have spilled over into my life. I tend to keep myself rather tightly wrapped emotionally, not allowing (or trying not to allow) myself to feel those dark and scary emotions which can be so overwhelming. I sometimes wonder if I have any emotions at all - the frightened, scared and sad ones, I mean.

    So I've decided to start a thread, as so many others have, to talk about Mum and me and our lives together.

    A quick background update: Mum was diagnosed January 3, 2001, one month and one day after her 64th birthday. She had been living with my stepfather in British Columbia but with my stepfather's consent and help, I moved her to my home in Ontario December 30, 2000, with the intent that she would live with my husband and I. Things rapidly degenerated and on the 3rd of January she was sectioned. She spent 2 weeks in hospital, then 2 years in a retirement home, and was subsequently moved to the nursing home where she has been ever since.

    I've detailed our rather tumultuous journey together in many threads here. Mum has kept things very interesting for us all. But now we are in the peaceful backwaters of her disease. She's wheelchair bound, doubly incontinent, incapable of feeding herself and no longer speaking. Still, she smiles and laughs and enjoys her food.

    She was put on thickened drinks last June and I found that very hard to accept. Mum had been declining so slowly and gradually that I never really saw it. Then we had to thicken the drinks again. A couple of months ago she was put on pureed foods.

    I know these are all logical and reasonable steps but it's taken me quite some time to accept them. In addition to that, I sometimes find it difficult visiting Mum. One of the hardest things is that she no longer smells like my mother. Does that make sense? I miss her on so many levels, and we were so very close I honestly thought no other mother & daughter were so close.

    In many ways I have had to grow up since my mother's diagnosis. Yes, I was an adult before, married, stepsons, responsible work, an active social life etc. But that diagnosis severed my life into two sections: before and after. I have built a new one but feel that I have emotionally compartmentalized myself a great deal.

    I have a lot to be grateful for - a loving and understanding husband who has been my rock, a sister who backs me up in everything, close and loving relatives and in-laws and friends. Most of the time I am grateful but it's those 'dark times of the soul' that get to me.

    Mum was diagnosed with a UTI a week ago but has responded well to the antibiotics. She's eating normally again - she had gone off her food a bit, which is unheard of in my mother's family. Ravening wolves or piranha feeding frenzy would be a more accurate way of describing how my mother's family ate. :D So I was extremely concerned when I had to cajole her a bit to eat as that would totally out of character.

    I'll be visiting Mum at lunch tomorrow. I always visit at mealtimes so that I can feed her and have something to do. I just cannot manage to visit at other times, because what would I do? I need to do something concrete and feeding her is good for her, me and the staff. Plus I tidy her clothes up and check to see if anything needs repair or to be discarded.

    I hope to be able to discuss my feelings more here. There are so many people who are sterling examples for me.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    It`s really good to see you starting this Thread about you and your mum Joanne.

    I hope it will allow you to offload some of your feelings, feelings which seem to have been bottled up or denied expression for far too long.

    I`m sure you realise this comment is from one who has taken everything TP has had to offer with absolute humility and gratitude.
     
  3. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    Dear Joanne

    It is good to read you thread, because I recognise so much in it that reflects how I have felt as Roger moved through the different stages, and how hard it is to keep a conversation going when there is no response! I tried to remember that he was listening to me, but was unable to respond; although we often communicated through laughter! I became very good at phrasing questions with the answer "Yes" :)

    Over the years, I have received so much support from my friends on TP, and think I would have "gone off the rails" without this support. I am sure many people will be here to respond to you, because sometimes it's good to share, especially with people who understand so much of what you are feeling.

    I hope your visit tomorrow is a good one, and Mum is back to eating as normal.

    Jan x
     
  4. 2jays

    2jays Registered User

    Jun 4, 2010
    11,604
    West Midlands
    I can relate to so much of what you have written xxxxx


    Sent from my iPhone using Talking Point
     
  5. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    This brought tears to my eyes, so much you've said just sounds familiar to me
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,594
    Female
    Dundee
    I'm glad you've started this thread Joanne.

    Although Bill's progress in the disease has been different to your mum's and we are at a different place just now i recognise a lot in what you write. Bill was diagnosed in October 2001. Reading your thread reminds me of lucky (if that's a word to be used in relation to dementia) that Bill is where he is.

    Looking forward to sharing your journey here. I find having a thread for Bikk such a comfort. I'm sure you will find the same. x
     
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    I went to feed Mum lunch today. I got there around 11 am so I wheeled her out to the gazebo and then blithered on about the weather, her granddaughter's wedding in October, the trip my husband is on - I gave her his entire itinerary and what he'd been doing (he's in Scotland now). I babbled on and on until it was lunch time. She was unresponsive, she sat with her eyes closed.

    I had a great deal of trouble getting her to eat. She seemed very tired, eyes closed the whole time. Normally, even with eyes closed, she would open her mouth for the spoon. Today, I had to try everything. I shook her arm, kept talking to her and I kept wiping her face with a cold wet cloth to wake her up a bit - she didn't like that. It was a long process, as she would swallow a couple of spoonfuls and then stop. I kept touching her lips with the spoon but the automatic open reflex wasn't happening. I had to plod on.

    I found it very frustrating and sadly, I started getting a little angry. I managed to quell that but I had to do so a few times. It took about 50 minutes for her to eat her pureed lunch - pasta and beets, and 3 small glasses of fluids - milk, juice and water. I got everything in her except half the water. I skipped dessert, frankly I just forgot it and when I remembered, I couldn't do it. Dessert would have been pureed fruit anyways.

    I spoke to the staff and she has been slowing down with eating lately. She is off all behavioural meds and any meds that would cause drowsiness. So I must put this down to disease progression.

    Plus one resident died this week who Rudi & I had been close to. He had MS and was only 62. Unfortunately he died after my last visit and the funeral was yesterday. So I didn't go. But I will be sending her a card.

    Fortunately, friends took me out for lunch after that and it was a relief. His mother died of a rare dementia nearly 2 years ago so they are very understanding and supportive.
     
  8. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Oh Joanne, how much I remember the same sort of phase with David and all the emotions that go with it. I also went in so that I could feed him and I had to register how he ate and the amount of fluid taken. It was extremely difficult.

    In between I tidied up, brushed his hair, brushed his teeth, sometimes an additional shave - and then held his hand whilst watching tv which we had fixed on wall at end of his bed. Whilst he did not understand any tv he seemed to focus on the colour andmovement :confused:

    I am so sorry you have to experience this but I am sure your Mother is comforted by your presence.

    Take care of yourself through all this - you are important too.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Would it be a terrible thing if your mother ate less Joanne. Perhaps she doesn`t want the food.
     
  10. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    This experience has only been a matter of months for me, so I can only empathise from my limited knowledge. But the bit about detaching [even if you don't want to] really resonates. I went from knowing there definately seemed to be something wrong around Christmas, to my mum going onto a psychiatric ward voluntarily in early February, and then being sectioned (first on 2 and then on 3 of the MHA), to her finally being moved to a care home towards the end of April. We had to sort out the care home very quickly, and wanted one near us rather than where my mum had been hospitalised (which was her LA area). There's never been a diagnosis of dementia, probably because events overtook the medical profession (it was originally thought she had 'steriod psychosis', but that's something that can be dealt with and does not normally have any lasting effects).

    Despite the speed of the move to the care home, I've been content knowing she's there; mainly because of the difference between the environment (inside and out) of the home compared to the hospital, the intensive level of care offered, and the homeliness. We can come and go as we please without feeling mum's in prison, because we have the door codes. Plus, we can get to her in 20 minutes.

    However, I now realise that I was probably very close to having a breakdown myself. I had been, and still was, under an immense amount of stress (not just because of my mum) and it was manifesting itself in physical symptoms. I think I then developed IBS (only diagnosed via Google :eek:). I believe (again, purely self-diagnosed :)) that my mind was so overwhelmed that it thought, 'It's the mind or the body', and chose the body. I already have chronic depression, so I'm glad my mind chose the body. Since the onset of the IBS a lot of the other physical symptoms have disappeared.

    Anyway, I've waffled on, so (at last) I'll return to my main point. At some stage, about two weeks after my mum went into the care home, my attitude changed without any help from me. I went from desperately believing there was some thing, some help, that I could use to make my mum better, to acceptance that I could only offer what I could offer, and I (and she) need the care home to do the rest. It's as if I accepted that 'that was the mum I had; this is the one I've got now, and I can never get the other one back'. I do have to stop myself from thinking about many things in order to deal with that, but at least it's working for now.

    Good luck and good health to everybody on here.
     
  11. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    No, it wouldn't necessarily be a terrible thing, as she's quite a healthy weight. She has lost a fair bit of weight in the last while. I'm thinking it's because we had so many shutdowns and my dreaded aunt didn't go in and feed Mum like she was a foie gras goose.

    But it is a VERY uncharacteristic thing for her to eat less or eat more slowly. That's what I'm finding hard. Until a couple of months ago, Mum would lean toward the spoon while I was feeding her. Now she doesn't and that's a huge change.
     
  12. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Joanne, this is all very emotionally difficult isn't it? I remember Pete 'sleeping eating' with little awareness of what he was doing-he was just going through the motions-a reflex-no enjoyment. It's very hard as we all know that some amount of fluid/food is needed to sustain us. When this need slows down we imagine the worse. Your Mum may start to take food again (Pete did in varying degrees) or she may be telling you she doesn't want to be bothered!

    I used to feed Pete his lunch everyday and it took a minimum of an hour-a year or so before he died he could polish the whole lot off in 20 minutes! Acceptance, for me, was gradual; as too when other stages came (not walking etc). I even got to the point where I stopped looking for a cure for AD online-and I never thought I'd get to that stage-it took a while!

    Carry on posting about your Mum; I hope it will help you.

    Love,

    Lyn T XX
     
  13. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    I had a conversation with one of the nurses this evening. I had left a message asking if Mum had been weighed this month. Last month Mum lost 6 kilos, which is an enormous amount of weight for a month. But she had been ill and my aunt had been unable to come in and feed her as if she were a foie gras goose. My aunt is only occasionally annoying now - I think because the staff isn't telling me most of what she's doing.

    This month's weigh-in Mum had lost 1.5 kilos. She is currently on reduced portions for breakfast and dinner, simply because my aunt comes in at least twice a week and stuffs Mum full of food. I asked for the dietitian to call me so we can discuss whether or not Mum should go back on regular portions. I'm thinking yes as we can always reduce portions later on if necessary. Mum is still over the top end of her ideal weight so it's not an issue yet. I'd like to avoid it becoming an issue for as long as possible.

    I was talking to my sister today, telling her how long it took me to feed Mum yesterday. She feels very sorry for me and thinks I'm very stressed by it all. I think it's hard for her because she doesn't see Mum often and the changes always hit her hard. I have told her she has to come and visit more often and she agrees.

    We'll see how things go. I won't be getting to Mum's until Friday or Saturday at the earliest. I should have had my conversation with the dietitian by then.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    I hope you can come to a decision which makes you feel less anxious Joanne. The dietician should be able to guide you.

    It would help if your sister was able to share the responsibility a little more but I believe she would have a longer journey.
     
  15. 2jays

    2jays Registered User

    Jun 4, 2010
    11,604
    West Midlands
    No wise words for you sorry

    Just know I'm holding your hand walking the same walk as you xxx


    Sent from my iPhone using Talking Point
     
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    Yes, it is quite a long journey - a 7 hour drive one way. When Mum was first diagnosed my sister came down just about every weekend for a couple of months. But she couldn't keep that up. We're in regular touch and I keep her updated. She's also PoA but in reality, because of the distance, I do all the admin stuff for Mum.

    My mother and sister had a difficult relationship, mainly because they were too much alike in many ways. Isn't that often the case? So I do think it's more difficult for her because of that. Plus I know she feels badly that I'm doing the lion's share of the work with Mum but with the distance we haven't any other options. She has started buying clothes for Mum and sending them here and she says it makes her feel that she's contributing something. She contributes more than she'll ever realize.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    It`s tough because a difficult relationship can rarely turn into devotion when illness strikes.
    It was the same for me and my mother and while I did my duty, because there was no one else, my sister walked away.
     
  18. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,407
    leicester
    Joanne, I think one of the most important things family members can do is to make time to support you as the carer, and always being there when needed, even at the end of a phone line is invaluable.
     
  19. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    Joanne, I have so sensible contribution to make, but do recognise so much. I wish you strength with your caring of mum. It's good that your sister is supporting in whatever ways she can; sometimes, just being there as a listening ear is a huge help.

    Sending love and strength. J x
     
  20. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    We visited Mum yesterday. Again, it took close to an hour for her to eat lunch, although this time she did eat her dessert. At least her eyes were open and she made eye contact but she still took her time swallowing with the fluids. I don't know what it is she doesn't like about the fluids but it's definitely there. Being as stubborn (if not more so) than my mother, I eventually got both the glass of milk and the glass of juice down her.

    It leaves me feeling irritated with her, which I realize is a) illogical but b) understandable. Then of course I feel guilty for being irritated with her.

    Intellectually, I understand why I feel the way I feel and how my emotions are completely understandable in the circumstances. However, I am having problems cutting myself a little slack. It seems that others are much more patient and manage a lot better. Yes, I know I shouldn't compare myself to others but sometimes it's difficult.

    I consoled myself with a great deal of retail therapy this weekend - a dress, white summer slacks, capris and four tops.
     

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.