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Journeys with my mother.....

Discussion in 'I care for a person with dementia' started by piph, Nov 8, 2015.

  1. piph

    piph Registered User

    Feb 4, 2013
    #1 piph, Nov 8, 2015
    Last edited: Nov 8, 2015
    We've spent the last few days working hard, in preparation with moving in with mum to look after her.

    I know I said I never would. She told me years ago not to, shortly after she suffered from a nasty bout of shingles from the stress of looking after her mum, my granny, who lived with my mum and dad. Granny had dementia too.

    But.... and it's a big 'but', it just seems to be the right thing to do. I'm sure it is what dad would have wanted (seeing as it was him that insisted that my granny went to live with them). And, after some serious soul-searching, I think I can cope. She's not bad enough to need a care home, and I don't want her to be in one unless and until I just cannot look after her an longer.

    Her physical needs have become more severe - she doesn't eat properly, rarely showers or even washes properly, is increasingly incontinent, cannot remember to do the normal things she once would have done to look after herself and her home.

    She has had carers in twice a day now for over a year, but doesn't let them do much for her, and stubbornly refuses to do anything they ask, and of course, they cannot force her. I can. I can be cruel to be kind. I can tell her she MUST have a shower because she smells, and she'll take it from me. I can get her out of bed and change the bedding because she has wet it. I can chivvy her along and stop her from spending all day in bed. I can do all these things because she is my mum.

    She is lonely. She is bored, and she is depressed. She needs someone around most of the time. She doesn't need 24/7 care, she just needs to know that someone is there.

    I don't go out to work, so I have the time to do all these things. OH and I took early retirement to travel the country on our narrowboat. Oh well, the best laid plans.......etc, etc. Life kicks you in the teeth sometimes, and you just have to suck it up and get on with it.

    We've been clearing out unwanted 'stuff' that mum has hung on to, but will never use, to make room for our 'stuff' (that I will probably never use :eek:). She is moving into the guest room, which is big enough for her to have an armchair in, so that we will all have our 'separate' space. We are moving into her old bedroom, which has more cupboard space for our 'stuff'.

    Today we hired a 'Rug Doctor' to clean the widdle from the carpet in the bedroom. When she asked why we were cleaning it, I told her. And, bless her, she asked if we'd like to get a new carpet put in there! I told her 'No', not unless we couldn't get rid of the smell. It's not worth it unless we have too, because, maybe next year we will try and buy somewhere a big bigger for us all.

    We just have to sell the boat first. It will break our hearts, but it's a luxury we can't afford to have sitting deteriorating in a marina, and not get full use out of. It was our dream, but now it has to go. I've come to realise that mum is more important. It's taken me a long time to realise that, I'm ashamed to say.

    So, we've arranged the removals, we've bought a new fridge/freezer, the Sky man is coming to fit the satellite dish on Tuesday, and OH is sorting out the phone and the internet. We've hired some storage space for the 'stuff' there is no room for at the moment.

    Tomorrow we will spend sorting put the spare room in our mobile home, where our 'stuff' is now, to take it to the storage place on Monday.

    I'm going to use this thread as a sort of blog to chart our progress. Feel free to comment, but please, no negative comments. We've made our decision, and I don't want to hear any horror stories that will make me think we've made the wrong one. I'm sure we'll have plenty of our own horror stories in the future.

    So, the dementia journey with my mum begins......
  2. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    Wishing you, your OH and your Mum as smooth and as happy a new "adventure" together as it can be xx
  3. 3rd generation

    3rd generation Registered User

    Jul 7, 2010
    Good luck

    You have thought it through and made your decision so all the luck in the world. Hope that there is a garden or back yard where you can go to count or scream. But there will also be rewarding happy times. Enjoy the journey!
  4. jeany123

    jeany123 Registered User

    Mar 24, 2012
    I hope it goes very well for you all x

    Sent from my iPad using Talking Point
  5. hvml

    hvml Registered User

    Oct 10, 2015
    North Cornwall
    In a lot of ways it was the start of a new adventure for me. I arrived on the bus with my one small suitcase......My advice would be to make sure you get some positive memories. Plenty of treats for you and OH and Mum. Look after your health. Hope it goes well .
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    What a good way to start a Thread and a journey. I wish you all the luck in the world piph. You deserve it. :)
  7. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    What a positive post Piph. I can indentify with a lot of it because we had mum move in with us. It actually things much easier for me as we were constantly crossing town to sort something out at her house. Of course it wasn't all plain sailing but it allowed us to have some good years together before she eventually passed away.

    I also used TP as a kind of blog (at the time I had no idea what a blog was!). I found that really useful in being able to ask for ideas and support and to look back as things progressed. Of course I now do the same for Bill.

    I wish you all bon voyage for your journey.
  8. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Good luck, Pip - you know its not going to be an easy ride - but then, whatever route you travel, once you add dementia to the mix, nothing ever is easy! I understand totally where you are coming from though - sometimes, you just have to opt for what feels right to you and for the choice you feel you can live with :)

    I'll be following your journey with interest xxxx
  9. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Good luck xx
  10. daisydi

    daisydi Registered User

    Feb 25, 2015
    Best of luck

    Just to say I wish I could have done this for my mum but I was on my own and I knew it wouldn't be healthy for me. I wish you all the luck in the world.
  11. Tin

    Tin Registered User

    May 18, 2014
    Good luck Piph. I made the same decision as you almost two years ago for all the same reasons, only difference is I moved mum in with me. To be blunt I cleaned her up, fed her so she increased her weight, gave her some purpose for living and I became a health and safety officer in my home. I know that without my intervention my mum would have deteriorated fast, can only live so long on cigarettes, strong tea and cold tinned rice pudding.

    Now she is once again a very smart and well dressed lady, with attention to details like nails and hair.
  12. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    Good luck. I have made same decision about 10 years ago (although I was seeing depression. I didn't realise it was dementia)
  13. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    Good luck; make sure you keep a social life as far as you can. Caring can be lonely.
  14. Quilty

    Quilty Registered User

    Aug 28, 2014
    Best of luck and i hope you all well. Please make timr for yoursrlf and your husband too. We only get one life. Have you thought of a day care option fot your mum? One positive abour fare homes nobody talks about is the friendship and a peer group. Even with dementia friends areca great comfort. My mum has a few ladies she enjoys being with. I hope you get something like that too.
  15. Earthangel

    Earthangel Registered User

    Feb 8, 2014
    South Yorkshire
    Journeys with my mother

    My, how I admire you and how patient your husband must be. I made the decision last Christmas that mum couldn't come and live with us or us with her, I would have a nervous breakdown. Now if my dad had lived, he died of cancer last year aged 87, that would have been a different matter. But mum is very selfish at times, she is all me, me, me and thinks I should do everything and my husband doesn't need me and why do I need him? However, she bangs on about her husband (my loving father) and says how much she misses him. They had been married 57 years, only had one child, me and we were a loving, family. Dad was diagnosed with bone cancer from Prostrate Cancer in January 2014 and died in June 2014 - I cared for him 80 hours a week. It was during this time we noticed mum was acting strange and previously we put it down to old age. She blew her top when I said I thought she had dementia and she was horrible at times to dad, saying she was too old to look after him - Dementia talking. She and he would do anything for each other. Dad was very lovely, but mum can be cantankerous, like her father. She doesn't like our 3 cats, she doesn't like our stairs, she doesn't like my husband having a few cans and then my husband gets ratty and I end up being piggy in the middle. I care for mum 40 hours a week and we go to the Dementia Cafe's 1 - 3 times a week, days out etc... but she isn't happy with being on her own when I go home, so I need a solution. No one else to visit. Mum won't have carers, she wont wear fall alarm, she wouldn't have stair lift for dad, she won't have a wet room built on the house, so unfortunately, she'll have to go in a care home when the time comes - her stubborness will win, the result she doesn't want. So, so difficult, good luck and stay positive. xx
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Oh piph, I am so touched by the decision that you and your husband have made. It was a tough one, I'm sure.

    I hope you are able to keep some time for you two as a couple, and for you all as individuals. But apart from that, I absolutely admire your decision.....it's all about family and love really, isn't it?

    I look forward to reading your 'blog' and wish you all the luck in the world :) :)

    Love, Lindy xx
  17. Bod

    Bod Registered User

    Aug 30, 2013
    Piph, your post so closely mirrors our situation, we to got set to live on a narrowboat and cruise, till both in-laws were too ill to leave, the boat is our sanctuary!
    I can't help but think that in your mothers case, she may well be a very good candidate, for going in to care.
    There she would get the help needed, company, and no worries as to where the shopping is coming from, or the pile of washing needing doing!
    From experience, you are heading for a long and hard haul, which will have the disappointment of the boat, in the background.
    Mother going into care, gives her the comfort she needs, and you the opportunity to live your life, and see her in a happy frame of mind.

  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    For lots of reasons I didn't have the opportunity to try this.
    You are amazing and will always be able to say that you did everything you could to support your mum.
    Please, though, think on what Quilty and others have said - make time every week for yourself alone and time to be just the 2 of you, you and your OH - day care for your mum or a regular sitter will give you some time to be without her knowing she is safe.
    And accept support for daily tasks - have a cleaner regularly and maybe she will be more accepting of home care if you are there as well.
    I truly wish you all the very best.
  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    I so agree with Shedrech. If part of your plan is to get a carers assessment and attendance allowance and some daycare or lunchclub then I had some very good advice from a professional - do it as early on as possible both for the sake of you and your mum
    good luck looking forward to reading about your journey and we are here to support xx
  20. piph

    piph Registered User

    Feb 4, 2013
    #20 piph, Nov 8, 2015
    Last edited: Nov 8, 2015
    Thank you all for your kind, positive comments, and all your ideas.

    I wrote that at 2 am this morning when I couldn't sleep for all the thoughts running round my head, and had to re-read just now to make sure it made sense.

    OH and I will make sure we have time for each other, and we will make sure that we keep up with friends. We won't need a sitter to go out for a few hours, she's perfectly safe alone - after all, she's been living alone all this time. She doesn't need constant watching as she doesn't wander and she isn't a 'faller'. We also have a dog who we will have to take out for a long, long walk at least twice a week, with normal walks every day. And yes, there is a small courtyard garden where I can go for a scream!

    Day care at the moment is a non-starter. She is very confused in the mornings and would dig her heels in if I tried to get her up too early to get her ready to go. She has been going to a lunch club once a week for a couple of years now, but hasn't been now for almost 2 months - again the carers have found it impossible to get her to get up in time to go. Age UK, who run the lunch club have been very good, and have put her place on hold in case she wants to re-start. Once we get things sorted, I will get her to her GP to see what extra medication she can have, anti-depressants and arthritis meds hopefully. She used to take these, but we had to stop them when she started to pretend to take her meds and then hide them from her carers. When I'm supervising I can make certain she takes them. Hopefully she'll improve in health and spirits, and want to go again before too long.

    She already gets AA and I now plan to apply for carer's allowance. We are seeing the SW in a couple of weeks and I will discuss it with her. Not sure whether I need a carers assessment before I can apply for CA, but I'll find out.

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