Dementia and learning to live alone

I have not posted recently because I am not quite sure how I feel.  There has been a lot going on for me which has seemed to put my life on hold.  My Mum who has had vascular dementia for a while is in her final stages of life.  She has been in a wonderful nursing home having not left her bed for a year.  Each time we get a call from the Doctor to say “please come it is only a matter of days”, she rallies round and surprises everyone by recovering!  She has a will of iron and it seems that she wants to hang on to pass away with my Dad.  She doesn’t want to ‘go without him!!  At 93 he is not quite ready to go so it seems she will fight to stay longer.   My Dad visits her every single day for a couple of hours at least and sits with her talking to her and strokes her face and hair.  She hates it when he leaves and when she was still able to talk she would say to him “I could be dead by the morning” to try and keep him there!   My Mum has a great sense of humour and it is still there.  Still it is hard sometimes looking at her and knowing it will possibly be me in time to come.

Interestingly and remarkably her dementia seems to have improved the more her body has degenerated.  She is so aware, and sharp with a memory that amazes everybody.   I got to have a private conversation with her a few weeks ago and made my peace with her, I felt I could understand lots of things she was trying to say, and later she would look at me and ask me to tell my Dad what she meant when she was speaking.  Such is the benefit of me having Alzheimer’s that I felt I could know what she was feeling and trying to say.  Of course none of this would have been possible had it not been for the fact her mental cognition has improved.  Is this a common thing I wonder?  Perhaps you can tell me if you have experienced something similar with your loved ones in their final stages of life.

So, I have been travelling to stay with my Dad when I am called.  Sadly, like a lot of families these days there is little harmony in our family because of my sister who resents any input from myself and my brother, and I find it so stressful being amongst it.  Because I sound so normal, they do not realise that I find it hard to cope with it all.  I simply just want to stay, do cleaning, washing, cook his dinners, help him do things he wants to, visit my Mum, and stay calm.

What of me?

I have been learning to live alone again.  Not hard, but I seem to spend more time faffing about.stop-faffing-and-hurry-up  I now have a bus pass enabling me to catch the short bus ride into the town and do a little bit of exploring.  On good days I will walk along the river, and on days when I am in too much pain, I sit and read and, dare I say it, enjoy my own company.  At some point I will organise my paperwork so that I know where everything is, because I do what most people do and that is – I tidy up!  Meaning to return to the pile of papers and letters that I should be dealing with, I find I have not actually put everything in one place.  Oh yes, you all know the scenario of putting something away for the moment, then not remembering where, well I manage to have several places that it seems are beyond any sense or reason.   It takes time to develop those squirrelly places doesn’t it?

The people in the other flats are very nice….but seem so old!   Okay, the housing is for people over 55 years of age but why do I feel like I am the youngest there!   The elderly gentlemen meet in the mornings in the communal room and joke about being the League of Gentlemen, and I joke back that I thought they were the Hell Fire Club.  I have been invited to join them all for Bingo on Tuesday nights, games Wednesdays, and a quiz on Thursdays.  Is it ungrateful of me to wince inside whilst I am explaining it is not really my kind of interest.   It is strange living alone in a town where you do not know anyone, it feels kind of living in a silent world.

I also have not been well with a stomach complaint – whatever next!  Why can’t my bile duct behave itself, especially ten years after my gall bladder was removed.  It is simply not cricket!!

I still worry about my future.  I hope that the care home I will end up in will be so lovely as the one my Mum is in.  I see my Daughter not being able to cope with the stress of it all, but hopefully by then she will be more robust.

For the moment I am just trying to get by day by day.

Thank you all for your continuous kind words of support I really appreciate it. 🙂

to faff

Author: Gill

I read books and review them. Books are my escape. I have always loved books. I write a blog, I get involved where and when I can in things I feel that are important. I also have Alzheimer's Disease but it does not define who I am. I am in the early stages so you may not notice. So, I will tell you how it is.

16 thoughts on “Dementia and learning to live alone”

  1. I was getting a bit concerned about how you were doing as you hadn’t posted in awhile but I understand how that can go. My mom was put on hospice and rallied back and forth for a full year before she finally left so I can understand a bit. And thank you for the new word – faff 🙂

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    1. The waiting is so hard isn’t is. The doctors say my mother is amazing as she is refusing to leave us. We have been sitting with her all day for three days, she is unable to take any food or drink so how she is still with us goodness knows! We are going in shortly to sit with her again today.

      Faffing about is such a wonderful description isn’t it!

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  2. Loved hearing about your mum and he determination to keep going and wait for your dad.
    I know all about faffing – I’m an expert faffer!

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  3. Bo isn’t bedridden as your mum is (and he’s only 80) but I certainly experience the up’s and down’s all the time. Everything you wrote rings a bell with me. Everything. Not feeling as “old” as all of those old people around me; looking at a retirement home and thinking I couldn’t be with “those” people, then feeling ashamed for my thoughts and attitude. If I ever had a hero, you are it!

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    1. You are amazing Nancy as a loving carer 🙂 I think as Vicki says below, outside the door is another world, but I would rather live in the sheltered housing than a faceless flat somewhere. At least the ‘oldies and the goldies’ are still humorous at times and friendly most of the time. I am sure that some have some wonderful stories they can tell about their lives to a young-en like me 😉

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  4. Glad to read this. Have been wondering and worrying about you. For all the complications, you seem to be handling your situation very well. My mother also seemed somehow sharper in the months before she died. And faffing around is a lovely description.

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  5. Getting by Day by Day seems just about perfect to me. (I actually typed Dad by Dad 😀 )

    My Father’s Birthday today and I forgot (having just come home today from back surgery in hospital). Seems the general anaesthetic affects the brain somewhat.

    I was only mentioning you to my fellow patient room mate yesterday and wondering how you were.
    Sounds like it has been a little strange living in a new space and not knowing people. I do so hope you find a kindred spirit to share some outings.

    I was just watching an English TV serial and feeling a little seedy (having eaten too much dinner) and feeling that liverish congested feeling from having my own gall bladder removed some 14 years ago and 2 minutes later open your new post blog notification to find you have been feeling the same.

    It’s a strange world we both live in at our new apartments. Knowing no one really well other than 3 people on my floor who introduced themselves just before I went into hospital early last week. It’s eerie living in a high rise apartment and so deathly quiet during the daytime too. I’m fine in my apartment with my familiar books and belongings, but outside in the long empty white corridor and in the bare foyer on the ground floor a little like a science fiction movie about the end of the world (in which all humans have been erased except me).

    In a roundabout way, I know how you might be feeling.

    Good to hear a post from you all the same. Keep your spirits up.

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  6. so happy to hear from you. ive had so much turmoil and upheaval myself that i tried writing again on my blog, but the words arent there or there too bitter with everything.
    i understand the part of your mum. before my dad passed it seemed as if all of a sudden he was more respondent and aware of things. i believe he knew it was the end and his personality did seem to change but he clung on for much longer than any of us expected. i think its that “letting go” part that he wasnt ready to do with me as is your mum too.
    im sorry about the unfamiliarity as im going through the same. i just want a routine again and constantly say to my hubby that ” i just want to go home” but i dont even know where home is anymore. the traveling has been frantic and non stop so im looking forward and hoping to “land” soon somewhere for a bit just so my feet are on the ground. i know 5 or 6 years ago before this dreaded disease took me, traveling the country in an RV would have been the dream but now, its not. i thought in the beginning it would be exciting but the disease has robbed me of all excitement and wonder. hopefully soon i can be grounded more, write again, get a routine – before the disease i was very spontaneous, now i dread spontaneity.
    im so proud of you my friend and all of youve done. take those days to yourself, enjoy them. live with yourself. its ok to not want to do things that you do not like. its ok to just be alone. its ok to just do nothing. we each have our good and bad days. enjoy the good even if it just means looking out a window.
    looking forward to hearing from you soon
    🙂

    Liked by 1 person

    1. I understand what you are saying Mel. I so want to do things but yearn just to ‘potter’ about somewhere I feel at home in. Not quite there yet, maybe when I finally move closer to my daughter it will feel better. Love to you both xxx

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  7. Gill, It sounds like you’re doing a terrific job of handling both the loss of your husband and also the loss of home on the boat all while dealing with your Alzheimer’s. All these events are extremely stressful challenges. You are doing it. Make sure you are taking care of yourself. You need that. I’d love to chat with you sometime. H.I.T.

    Liked by 1 person

    1. Thank you Paulan, I am so glad I have you for my friend. I love it when you remind me H.I.T. 🙂 This truly has been a tough year and it is not getting any better, but I can also see some good things that have happened and to be thankful for.

      Right now I am glad to be sitting at my Mum’s bedside during her last days, although that itself brings its own conflicts for me.

      Will speak to you soon. x

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