Vascular dementia and TIAs

Discussion in 'Middle - later stages of dementia' started by Marnie63, May 12, 2018.

  1. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    Well, mum has been brighter this morning, so no call to the GP. I have left her in bed and did some clearing in the garage (well overdue!) and a trip to the dump. Very therapeutic. The carer has been with us for a longer slot today, so more help with the bed changes. Mum's arm is moving again, so we wait to see if it will recover, yet again, or not.

    You're so right @Carmar, it is ghastly. In an ideal world we would have specialist doctors at each surgery to consult about dementia patients, and also specialist hospitals for those with the condition, who need treatment for other issues. Actually, it should be possible in a not so ideal world, but no sign of it yet! If only all of us carers had the energy to come together as a group and sort out what would be needed, what a difference that would make.
     
  2. Carmar

    Carmar Registered User

    Feb 2, 2016
    1,124
    Female
    Hampshire
    We would be a force to be reckoned with Marnie. So pleased your Mum’s arm is moving again.
     
  3. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,199
    Female
    Greater London
    @Marnie63
    Delighted to read your Mum has woken to a better day.
    Nothing beats a good tidy and throwing stuff out even better.
    Take care. X
     
  4. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    500
    @Marnie63 you and your Mum must be made of the same tough stuff!
    I'm so glad there's been an improvement, very well done on the clearing--out too.
    Hope you have a calm evening.
     
  5. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    Today was one of those days when you wonder if life, the universe and everything has just got it in for you! Having left mum in bed for a few days since her last TIA and fall last Friday, I successfully got her up with the rotunda this morning and onto the commode. Managed a quick wash and got her dressed. The carer arrived for a two hour session and I went to buy some food, then we did another commode transfer with mum. Decided to then put her into her recliner in the lounge. Fortunately I have two slings for the hoist, so am now going to leave one permanently on her wheelchair and the other in the recliner so that if she gets 'stranded' due to a further TIA/weakness, I can at least hoist her out. We managed to transfer her up to the recliner, but I had forgotten to lift the footrest slightly so that the rotunda footplate could fit under it. Would you believe it, just at that moment we had a power cut! So back round we went to the wheelchair, now having to contend with the edge of a rug, which I thought nothing of when we started the procedure as didn't think we'd need to abort. We nearly lost mum between rotunda and wheelchair because with her standing on the rotunda, it was nigh on impossible to lift the wheels over the edge of the rug. Lesson learnt for next time. I called the number to report power cuts and they assured me that mum is a 'number one priority' on their register and that if the power was going to be out for a while, they would probably arrange for a small generator to be delivered so that I could at least operate the bed. As it was, the power came back about an hour and a half later, and she's now snoozing in the recliner. To be fair, I had three call backs asking if we were OK and assuring me the power would be back soon, so that seems to work OK.

    I had a bit of a weird experience last week with the care agency. When they recruit new carers, they send them out to shadow the experienced ones until they can be let loose on their own. You know when you'll get a shadow carer as they put it on the weekly schedule (doesn't happen that often), and of course they do not charge for this. Well, I saw the name, but it meant nothing to me. When the two ladies arrived for that particular call, I thought that I knew the second carer from somewhere. And then I realised - she had, until very recently, been working at another local establishment and had been very offhand, almost rude to me, there a few times. I had almost considered a complaint to the manager about her attitude. And now here she was, in my home, standing in the corner of the room, while we were toileting and washing mum. It made me feel quite uncomfortable and I actually wonder now if I should have said something when she arrived, but how could I have justified refusing her entry into mum's bedroom based on my experience with her at the other place? I doubt they will be sending her to mum as a regular, but if I see her on the programme, I will probably ask them not to send her here, I guess I could always say 'personal reasons'. It's so strange that all our private and financial information is so closely guarded and yet our 'privates' can be displayed to someone who only recently was doing a completely different type of job. Isn't that weird people, or is it me? I guess it's just another thing we have to contend with as carers/family of PWDs.

    I'm beginning now to wonder at what point I stop trying to keep mum mobile in some sense, but I guess I will know when that time comes - it will be when mum can't stand on the rotunda any more. I did three changes in bed yesterday myself - that's the most I will have to do on any one way as I always have at least one carer call a day. It wasn't easy, but it was doable. Better brace myself, as it's coming soon, I think. I have asked for a couple of extra morning calls next week to help me out, and if mum's strength fails to return this time, I will probably keep them in place. I'm going to have to change my mindset about this toileting issue soon if I want to keep mum at home!
     
  6. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    Just put mum back to bed. I think we did enough for one day, she looks really tired. I will probably leave her in bed tomorrow, just hope the power doesn't go out again so that I can at least manipulate the bed when I need to change her!
     
  7. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #27 lemonjuice, May 16, 2018
    Last edited: May 16, 2018
    Just be aware that if you move your mum less, she could then become liable to develop pressure sores. We battled for years with my m-i-l, although she didn't have dementia but was very disabled. The pressure sores went through seasons of flaring up and then being non-problematic for a while. With a good diet, regular care, creams etc we did manage to keep them at stage 1 -2 for many, many years.
     
  8. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    #28 Marnie63, May 16, 2018
    Last edited: May 16, 2018
    I know lemonjuice - she had a nasty one on her sacrum last year - hospital acquired! Mum has been on an airflow mattress since her stroke last August, though she was only 'bedbound' for a few months before she was able to walk again, but now she's declining further with the TIAs and just general age and dementia progress I guess. Her skin is, at the moment, in very good condition, but myself and the carers keep a check all the time.

    It's a worry, no sooner do you become bedbound than there's another set of medical issues to worry about. I didn't really understand pressure sores (a bit like dementia and strokes) until mum got hers, they are very nasty things.
     
  9. Carmar

    Carmar Registered User

    Feb 2, 2016
    1,124
    Female
    Hampshire
    @Marnie63, you coped amazingly with the power cut. As for the carer, that is most unfortunate. Could you not phone the agency before she is scheduled to you Mum and explain that you have crossed paths previously and please don't send her again? It is your home and you do not have to admit anyone who makes you or your Mum feel uncomfortable and you do not have to justify refusing admittance to anyone. It is your right. I know it is hard to do because it is so confrontational (think we've had this conversation before because it has happened to you and me before), but as you rightly know and are in fact saying, you need to keep all as serene as possible around you and your Mum. Your job is hard enough without bad feelings coming in to play from a third party.
     
  10. Cazzita

    Cazzita Registered User

    May 12, 2018
    286
    Wow, I feel so humbled by reading this, another way and level of thinking. Thank you for this xxx
     
  11. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    Thanks Carmar, just emailed the agency and that lady won't be coming here again. It really was an odd little incident.
     
  12. Carmar

    Carmar Registered User

    Feb 2, 2016
    1,124
    Female
    Hampshire
    Good for you @Marnie63. You've nipped it in the bud before anything more serious could occur.
     
  13. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    To be honest, based on my other experience with this individual, the thought of her being a carer and doing the one to one personal stuff they have to do, feels me with horror really.
     
  14. Carmar

    Carmar Registered User

    Feb 2, 2016
    1,124
    Female
    Hampshire
    The thing is @Marnie63, the chances are that if you felt this way at just seeing her, your Mum may have picked up on something about the woman too and when it comes to personal and intimate care, that is the very last thing you or your Mum need.
     
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,234
    USA
    Marnie, just wanted to say hello and I am pleased to hear you sounding a bit brighter.

    I also agree it was better to deal with that carer in the way you did. You don't need any additional stress and it's extremely likely your mum could have picked up on your reaction, and she also doesn't need any additional stress!

    The power cut would have upset me, but you clearly coped well. I hope those don't happen often in your area. (It would tempt me to put in a generator, but I know they are expensive and then it's something else to maintain.) Thank goodness the power company do a priority list for power restoration.

    Sending you and your mum all possible best wishes and some ((hugs)) for good measure!
     
  16. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    Thanks @Amy in the US . I hope all reasonably OK with you and yours. I must catch up on other people's threads - it's a bit intense at the moment as everything is taking even longer now with mum. I think she's starting to really fade now, all the fight is going, much weaker, no interest in anything. So sad, am bracing myself for whatever next ...
     
  17. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #37 lemonjuice, May 17, 2018
    Last edited: May 17, 2018
    Oh huge hugs. I know when my mother reached that stage I made the decision to put her into residential care, so I could concentrate less on the 'care' side and more on letting others do that and I could just enjoy being a daughter.

    As it happened that didn't work out and she just sort of drifted into a trance-world, sometimes awake but 'lost' or sleeping a lot and we didn't in fact interact during those last years, but that would have happened even if I'd kept her at home. I would just have been even more exhausted and burnt out. :(
     
  18. Tin

    Tin Registered User

    May 18, 2014
    4,802
    UK
    Sorry Marnie, completely missed the start of this thread, so just caught up. Hoping for a few more improvements for you and your mum. Take care.
     
  19. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,467
    Hampshire
    I'm pleased that we seem to have another reprieve and mum can stand on the rotunda again, though without the strength she had before the last TIA. I was actually going to leave her in bed today so that I could watch the Royal Wedding live (!), but noticed that her nightie was wet. Changing her in bed is one thing, but changing her nightie in bed is almost impossible on my own, or at best extremely hard. So I thought I would try to stand her up, and she managed OK, so she had a good wash all over today.

    I'm beginning to wonder whether it's even worth looking into some kind of bathing hoist for her. It seems like a very good wash with flannel and a special no rinse skin cleanser keeps her clean, and of course she gets at least two intimate washes a day because of the incontinence, more if there's a bowel movement. I don't think I could keep her any cleaner if I tried! Maybe I should just carry on with the flannel washes as it will be easier for her to endure. Why push her to bathe if it's not needed?

    We are on very limited time with the mobility though, I fear, and I already have a plan in my head if/when we move into the next phase - more time in bed.

    But, for now I am thankful that she can still stand. Thank God for small mercies and all that.
     
  20. Tin

    Tin Registered User

    May 18, 2014
    4,802
    UK
    So good to hear things have improved. On the washing side, I no longer force mum to take a shower or bath, its just too stressful for her and a little bit for me. She is clean and tidy and that's enough for both of us.
     

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