Vascular dementia and TIAs

Prudence9

Registered User
Oct 8, 2016
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@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.
 

Marnie63

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Dec 26, 2015
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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!
 

Marnie63

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Dec 26, 2015
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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!
 

lemonjuice

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Jun 15, 2016
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England
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.
 
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Marnie63

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Dec 26, 2015
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Hampshire
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.
 
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Cazzita

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May 12, 2018
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The 'multi-infarct' nature of vascular dementia can be unpredictable. Quite often there are no obvious signs of actual tia's taking place, even although there is damage at microscopic level.
I can understand completely your reluctance to hail an ambulance straight away, owing to the unfortunate situation in many hospitals which can so often mean constant anxiety for the carer over just what treatment is taking place with regard to 'dementia'., i.e. do all the clinical team have a firm handle on that very fundamental fact? You are quite clearly doing a tremendous job as it stands and every time one reads such accounts, personal experience is aroused quite vividly in the mind and heart, the level of commitment, the daily 'care' which can be so very exhausting, that burning desire to maintain the care and keep your loved one at home and close to you at all times.

Contemplating the nursing home is of course wise, subject to further and perhaps more critical events One returns constantly to the adage "best intent". You would not like to feel totally at a loss should something occur beyond your care and have that 'memory' of 'if only' as a constant and debilitating companion. Proper nursing ,when the time comes, is considerate and necessary a move for all the right reasons.

Whatever the outcome, the thing which has always stayed with me as a very powerful ally in the whole mish-mash of the process of caring for a parent with dementia -- with all its uncompromising elements and merciless nature levelled directly at you - is the fact that there remains something so very special and so very real in all of that, which never truly dies. For me, it is part privilege - that of caring for a parent, a 99 year old mother in my own case, tending on that vulnerable person, that innocent being (no one seeks out dementia) as a child of that very same mother, who tended upon you. And part enlightenment - that of engagement with something beyond the daily norm, the daily infux of world events, the stream of irrelevant 'fodder' laid at one's door, day after day. In effect, there is a focus and awareness of life at its most sensitive, seen through the victimization of the one whom you know and love, by an elusive and cruel disease, which infiltrates the very source of how we all function - the mind, the brain. It is that innocence which informs the heart in a very special way. You don't dwell on matters irrelevant, on past demeanours (if indeed there were any) nor personal ambitions or self-regard. There must be a truly great value in that. And when you read the many posts on this forum and the level of care which is being carried out, day after day, in that light, you can but only feel humbled and rather touched by it all.

Wow, I feel so humbled by reading this, another way and level of thinking. Thank you for this xxx
 

Marnie63

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Dec 26, 2015
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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.
 

Amy in the US

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Feb 28, 2015
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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!
 

Marnie63

Registered User
Dec 26, 2015
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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 ...
 

lemonjuice

Registered User
Jun 15, 2016
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England
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 ...
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. :(
 
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Tin

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May 18, 2014
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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.
 

Marnie63

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Dec 26, 2015
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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.
 

Tin

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May 18, 2014
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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.
 

Marnie63

Registered User
Dec 26, 2015
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Hampshire
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.

Thanks @Tin. How are things with you and your mum? Is she a little more relaxed, or still moving the furniture around? Hope all OK.
 

Marnie63

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Dec 26, 2015
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Hampshire
That's good news @Marnie63. If it's of any use to you, the daily strip wash with a flannel is how the majority of the residents are kept clean in my Mum's nursing home. The staff try to bathe each resident once a week but it is often not possible. I struggled with this and perceived it as a lack when Mum first went in as I had showered her daily at home, but they just do not have the time or staff to bathe/shower 40 residents a day. My own Mum is beginning to refuse personal care now and I don't think she has had her hair washed for weeks and weeks (she was afraid and averse to this at home but I could usually coax her). I think sometimes we try to keep our own standards of cleanliness as fit and well people in place for those we are caring for, but as long as they are clean enough for health, I'm not so sure it matters whether they bathe or shower. It can take so much of their energy and certainly saps ours as carers. I have had to change my thinking on all of this since Mum went in to care.

Thanks @Carmar. It's good to know what happens with others. You are right, I am probably applying my own 'standards' to mum, but routines really do need to be adjusted quite dramatically to suit the PWD! Having said that, I'm going to try to wash her hair today. I can get her up to the side of the bath in the wheelchair and she is able to lean over for me to quickly shampoo her hair 'normally'. She looks so much better afterwards when I've blow dried it all nicely!
 

Tin

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May 18, 2014
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UK
Thanks @Tin. How are things with you and your mum? Is she a little more relaxed, or still moving the furniture around? Hope all OK.
Yes, furniture moving has stopped, at least for the time being and she seems to spend a lot of time sitting at dining table with a few things to play with, but I think she is confused why she cannot see her little dog, especially when we are in the car. Although she usually accepts when I say she is at the vets or in bed. I am now seriously considering getting another small dog, of course against everyone's advice, but the house seems strange without one.

The hair washing is interesting, mum can no longer bend over the sink, but I can still wash her hair if just a little bent over, mainly neck. So with lots of towels on her shoulders and floor and her hair is short, so apart from a little shampoo I use no other products, making it easier to do a quick wash and rinse.
 

Marnie63

Registered User
Dec 26, 2015
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Hampshire
My back took a serious strain yesterday, so today mum is in bed. The morning bed change was hard, but at least less stress on my back than trying to stand her on the rotunda, which now needs me supporting her. She can stand, but it's too shaky to not support her.

The problem is that mum does not need to be bed bound. She can sit on the side of the bed, she can support her body weight. She can toilet herself normally if I put her on the commode, the problem is transferring her. I have a full hoist, and a rotunda. She does not need to be fully hoisted as there's still movement and some degree of mobility there, but she's currently too weak to safely stand on the rotunda on a regular basis. I am awaiting another OT visit, not sure when that will be. I will ask about the standing hoist and also a toileting sling for the full hoist. But, I think we are heading for a fast decline now. I think if I leave her in bed permanently, then that will be it. she will lose any muscle strength that is left. I will try to stand her from time to time. Maybe more bed rest will mean a bit more strength for the odd stand and transfer to the commode. Maybe I only do that now when I have a carer here to help me.

It's definitely getting harder now.
 

Tin

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May 18, 2014
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UK
This morning I had a little taste of what you are dealing with, mum was very rigid and it was hard to get her to sit up on side of bed and when I did manage it, getting her to stand was near impossible, commode very close to bed, but so hard it could have been miles away!

Found the bed rails down and I am not sure if she did this or I forgot to secure them in place last night.

Really hope you can source the right hoist to help you, everything crossed.
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
I'm trying to keep mum mobile for as long as possible. I just don't get why, when someone is able to still use a commode and still able to sense when they need to go, there is no safe way I can transfer her. Surely there must be something in between a full hoist and a rotunda? Why is it so damn hard to get some proper support and help, when the situation is already hard enough as it is?

Yesterday was such a gloomy day here, it made me feel really down and I was feeling quite sorry for myself. Mum seemed OK to spend the day in bed, but it seems wrong to make her bed bound. This is what happened in hospital, but of course the care there was so bad and she ended up with a nasty pressure sore. Why are hospitals not held to account for things like that? We can get compensation for PPI (well I can't, because I didn't have it!), but serious health issues like that are allowed to go unchallenged?

I guess today won't be much better, except I've got a five hour break with carers here. Mum will stay in bed again and I will see if I can get her up this afternoon for a few hours. I hate how hard and depressing this is now becoming and I really, really hate what this is doing to my health and my life too.
 

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