Vascular dementia and TIAs

[Marnie63]

Mum is really poorly now. I don't know if we're getting close to the end, but we are certainly going in that direction. She is 92 now (just). Initial 'event' was in October 2015 which left her with severe mental impairment, physically fine though. 22 months later (last August) she had a stroke which took away her mobility, though by Christmas she was walking again with aids. I have witnessed further 'mini strokes' at the end of December, beginning of March, mid April and yesterday. Each one leaves its mark. Yesterday she slipped off the wheelchair and fell onto the carpet. I was calling 111, but the thought of another hospitalisation and me practically living there to make sure she gets good care, made me cut the call before they answered. I managed to get her up and we carried on. This morning I've got her into the wheelchair, but she vomited on the commode - a lot of very mucousy fluid. I think it was because she swallowed air and gulped when I gave her one of her pills, but I did wonder if there was a heart attack looming (though of course I am not a doctor!). She's had breakfast and vomited again. Now going to try to get her on the commode and then into her armchair for a snooze.

I'm finding it quite hard now to make the decision about calling for help, or coping at home. I probably should have got her checked out after yesterday's fall, but I know they will want to whisk her off to hospital and then the horror of a PWD in hospital awaits me - you all know how it is.

I just wonder how many more of these TIAs she can withstand, and whether we are heading for one massive stroke/heart attack. In a way, I hope it is that, rather than a long, prolonged, shut down of brain and body.

Still pondering a nursing home and how much longer I can sustain this at home. It's hard, even with carers coming in to help me.

 

[lemonjuice]

Oh you poor thing.
I lost count of the number of tias my mother experienced during those last 5 years and of course we have no idea of how many incidences were unwitnessed. The Dr was convinced she was having many more than recorded by the NH and sometimes she seemed unconscious / difficult to rouse and the carers and I came to believe these were either pre-cursers or recovery from tias. I can't imagine coping on your own at home.

 

[Spamar]

OH had loads of TIAs, some very small, others larger, especially towards the end. The thing that made a care home look like the best option was one Easter when he had two big Tia’s that necessitated paramedics and time in A&E, and two falls. Although he was not heavy, I couldn’t lift him, I have my own problems, but good neighbours! He died just over 3 months later, just faded away.

 

[Hazara8]

Mum is really poorly now. I don't know if we're getting close to the end, but we are certainly going in that direction. She is 92 now (just). Initial 'event' was in October 2015 which left her with severe mental impairment, physically fine though. 22 months later (last August) she had a stroke which took away her mobility, though by Christmas she was walking again with aids. I have witnessed further 'mini strokes' at the end of December, beginning of March, mid April and yesterday. Each one leaves its mark. Yesterday she slipped off the wheelchair and fell onto the carpet. I was calling 111, but the thought of another hospitalisation and me practically living there to make sure she gets good care, made me cut the call before they answered. I managed to get her up and we carried on. This morning I've got her into the wheelchair, but she vomited on the commode - a lot of very mucousy fluid. I think it was because she swallowed air and gulped when I gave her one of her pills, but I did wonder if there was a heart attack looming (though of course I am not a doctor!). She's had breakfast and vomited again. Now going to try to get her on the commode and then into her armchair for a snooze.

I'm finding it quite hard now to make the decision about calling for help, or coping at home. I probably should have got her checked out after yesterday's fall, but I know they will want to whisk her off to hospital and then the horror of a PWD in hospital awaits me - you all know how it is.

I just wonder how many more of these TIAs she can withstand, and whether we are heading for one massive stroke/heart attack. In a way, I hope it is that, rather than a long, prolonged, shut down of brain and body.

Still pondering a nursing home and how much longer I can sustain this at home. It's hard, even with carers coming in to help me.

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.

 

[Marnie63]

Oh @Hazara8 your last paragraph just made me cry (in a nice way!). You have a great way with words on this topic.

We've had a terrible day today, on top of what happened yesterday. This morning mum sat up on the bed and managed to stand for a transfer onto the commode. Good, I thought, some strength is back. But dementia, as always, has other ideas. After breakfast onto the commode again, weak, but standing OK on the rotunda for a transfer. Popped her into the recliner and tried to get her out a few hours later for another commode visit, and the left arm was completely useless. Tried a few times, no go. Somehow managed to get the sling under her, and hoisted her into wheelchair and then into bed. There she will stay now for the rest of the day, and when the carer comes at 9pm, we can do another change. I will probably leave her in bed tomorrow as well. I should have learnt by now that after each TIA there is a period of sudden weakness with mum and then, usually a few days later, you know what you're left with.

Is it really bad of me to pray for a quick and painless end to this? Nothing has tested my faith as much as this situation, and sometimes when I pray, because sometimes that's all there seems left to do, I wonder if there's anyone listening. And yet, if I think about what has happened over the past two and a half years - I am blessed with a care agency who do an outstanding job and send us excellent carers, I have ended up in a house which completely suits mum's current requirements, I've had nothing but good support from our doctors and Adult Services. I have a lot to be thankful for and, at times, it's these 'positives' that pull me through the dark times. But, the focus is still my lovely, sweet mother, who didn't deserve to get this dreadful illness, but who does?

I have no regrets about what I've had to do so far to deal with this illness of mum's, just hope I have the strength to see it through to the end at home, with no doctors or parademics fighting me for a hospitalisation!

 

[lemonjuice]

Is it really bad of me to pray for a quick and painless end to this? Nothing has tested my faith as much as this situation,

I certainly prayed that prayer many times for my mother.
Especially as she had watched her own sister deteriorate for years in the very last stages of 'end-stage end-stage (deliberate repetition) just being 'kept alive' and it stressed out my mother every time she visited and she always said , "I'd rather be dead than live like that!"

But it seems the prayers took a long while to be answered.

 

[Hazara8]

Oh @Hazara8 your last paragraph just made me cry (in a nice way!). You have a great way with words on this topic.

We've had a terrible day today, on top of what happened yesterday. This morning mum sat up on the bed and managed to stand for a transfer onto the commode. Good, I thought, some strength is back. But dementia, as always, has other ideas. After breakfast onto the commode again, weak, but standing OK on the rotunda for a transfer. Popped her into the recliner and tried to get her out a few hours later for another commode visit, and the left arm was completely useless. Tried a few times, no go. Somehow managed to get the sling under her, and hoisted her into wheelchair and then into bed. There she will stay now for the rest of the day, and when the carer comes at 9pm, we can do another change. I will probably leave her in bed tomorrow as well. I should have learnt by now that after each TIA there is a period of sudden weakness with mum and then, usually a few days later, you know what you're left with.

Is it really bad of me to pray for a quick and painless end to this? Nothing has tested my faith as much as this situation, and sometimes when I pray, because sometimes that's all there seems left to do, I wonder if there's anyone listening. And yet, if I think about what has happened over the past two and a half years - I am blessed with a care agency who do an outstanding job and send us excellent carers, I have ended up in a house which completely suits mum's current requirements, I've had nothing but good support from our doctors and Adult Services. I have a lot to be thankful for and, at times, it's these 'positives' that pull me through the dark times. But, the focus is still my lovely, sweet mother, who didn't deserve to get this dreadful illness, but who does?

I have no regrets about what I've had to do so far to deal with this illness of mum's, just hope I have the strength to see it through to the end at home, with no doctors or parademics fighting me for a hospitalisation!

Dear Marnie63,

I sense that you DO have the strength, and more, to see this through. Clearly, the 'positives' you cite are a blessing in themselves. And having 'no regrets' means so much, because that alone provides a kind of clarity in one's general well being, no burden of 'if only', nor 'I should have done this or that' and so on. That tells all. And just as long as there is no real stress, nor pain to be properly and clinically addressed, then having 'mum' at home with you, is right and proper.

We each and every one of us react in a natural and wholesome way to any presentation of pain or distress in another. That is innate. So wishing for a 'quick and painless end' stems from that mysterious part of ourselves which has total empathy. You might use the word compassion, but whatever term is adopted, the word in the end, is not the thing. There is something which goes beyond all of that and when it is pure - neither pity nor distress - then it is right and it is true.

And as we cannot curb nor prevent 'nature' in running its course, that affinity between, say, a daughter and a mother, is rather precious and commands due deference. Dementia world enhances that affinity in such a way as to make life much more than simply a life to be led.

I think that you express such in your obvious 'care' and we thank you for sharing it with us.

 

[Amy in the US]

Marnie, I'm so sorry.

No, I don't think it's terrible to wish for a quick end and no lingering with pain and suffering. I know I hope this for my mother, every day. (So if it is terrible, well, you have company!)

I can understand not wanting your mother to return to hospital. I get that 100%!

Some thoughts would be to call the out of hours physicians if you think she needs to be checked out, or call the GP on Monday. I would imagine they would understand your reluctance to hospital trips.

I also wonder about getting increased support and care? I know you don't love the parade of carers coming and going, but please don't let this get to be too much for you physically. Or might she be eligible for some sort of hospice or palliative support?

Another option would be a care home and that is not a terrible idea. They could do the heavy lifting of washing and changing and laundry, and you could visit and spend time with your mum as a daughter. There is no shame in that, if you choose to consider it as a possible option.

I know it's incredibly difficult, no matter what, and I'm sorry.

 

[Marnie63]

Thanks again Hazara and Amy, and the others who have replied. I really appreciate your words, I do find this community so supportive.

I think it's time now to rethink the support I get from the care agency, as in step up the calls so that they do more of the harder stuff, ie. changing mum and washing her in bed. Her arm is still completely lifeless this morning, so we could have reached the stage now where she is unable to use the stand aid any more. I was dreading this. Her being able to stand up on that thing meant that I could toilet her 'normally' on the commode and also move her easily around the house, once I'd got her into the wheelchair. Now it will have to be back to hoisting, which is all doable, but I absolutely hate that hoist (as does mum!), and I need help with it, which is another thing I dislike, as I like to be able to cope and do more on my own when the carers are not here. But, I knew the dementia would progress, so need to probably get more calls in so that in my own mind I know I only have to do a certain number of bed changes myself. That I find very, very hard on my own, and that isn't going to change.

There is some hope that maybe she will still shake off the effects of this last TIA and some strength will come back to the arm, and she will be able to stand again, but I need to be realistic. She has done so well so far and at 92 I can see how tired her body is now of all of this.

 

[Prudence9]

@Marnie63 I feel that the time has come for you to look in to Palliative Care at home for your Mum.
I don't know what is in place for this in your area but this is what happened with Mum and me when I strongly suspected end of life was close - whether that would be in a month or a year. Mum's dementia progressed fairly quickly and thanks to a combination of reading on here and the endless googling we all do, I found this information from my Community Health Group (links to leaflets to come at the end of my post).

I desperately wanted to keep Mum at home - as we all want to do for our PWD - and we had been "fortunate" in that Mum was relatively calm throughout the 4-ish years her dementia was apparent ,so I coped on my own with Mum bed bound and incontinent (sorry to bore you again with our tale, but for anyone in a similar crisis situation it may help to have a little detail) and couldn't bear the idea of Mum having to leave for a care home or hospital if the end was coming.

In late January her swallowing had started to go and tablets where becoming very difficult to get down, she could no longer speak at all at night and just had "a look" about her.
Armed with the information from the referral criteria leaflet in the link, I knew that Mum qualified for palliative care (PC), at home and asked our supportive GP to home visit for a referral to the SALT team and a possible referral for PC.
Of course when the Doctor visited, Mum was having a "good hour" and I found myself backtracking and saying maybe I had jumped the gun and perhaps we didn't need it yet....the GP looking at me as if I was mad and Mum was likely a long time away from her end didn't help my confidence about the referral either.

About a week later Mum took a massive turn for the worse and the process swung in to action incredibly quickly. I think the GP had discussed my request at the following Practice meeting.

So.....If you think Mum will be ok today, do as much research as you can manage re PC in your area - I just googled "Palliative Care, Liverpool" initially.

Call Mum's GP first thing in the morning and ask for an urgent home visit. When they make the pre-visit phone call, explain how Mum is, that you want a PC at home referral. You want her to stay at home and not be moved to Hospital or a CH.

When the GP visits they will examine your Mum, discuss the referral (hopefully) and explain that they will setup a DNR and inform 111 service that this is in place which will prevent any careful paramedics (we didn't need any but you never know), whisking your Mum off to hospital.
You will need to pick up the DNAR copy at the surgery later and also the prescription for the "Just in Case" package of medication ready for the District Nurses who will be contacted very quickly by the GP and who will call you to set up a home visit as soon as they possibly can.

As I had no Carers and managed Mum's personal care myself, they arranged for Marie Curie trained Carers to come in for as many visits a day as we needed/wanted at no cost to us (PC at home is NHS funded) - these women were saints and patient angels who cared for Mum, me, sister, brother and nephew wonderfully well with the DNs visiting every day and when required 24/7 to administer any drugs Mum needed - not many as it turned out.
Mum died on Feb 15th, in her own bed, with us all around her. She and I had many precious moments over those days and nights

Marnie, I am hoping I am not distressing you by suggesting that your dear Mum may be at final stage, I just want you to know that there is/should be amazing help out there for you but they don't tell us and as usual we have to dig it out - so I hope this info helps a little, prepares you, so that when the time comes you are not scrabbling round in the dark.

I just hope I haven't confused you - I will keep a close eye on your thread and if you want to ask me anything at all if you think I can help then please do xxx

Links to Palliative Care info (Liverpool):

https://www.merseycare.nhs.uk/media...ce-Referral-Criteria-and-Guidance-Leaflet.pdf

https://www.merseycare.nhs.uk/media/4628/Specialist-Palliative-Care-Patient-Leaflet-V3.pdf

It's such a stressful, intense time, thinking of you (((X)))

 

[Marnie63]

Thanks Prudence, that's very helpful. I'm sorry to read about how your mum declined towards the end, I know you said a while ago you weren't ready to 'talk' about it, so thank you for sharing that here.

The problem is, I don't really know the point at which mum would qualify for Palliative Care. I have already discussed it with her GP and he said that when the time comes, they will help me with this, and based on the support I've had from him and the surgery in general so far, I have every confidence they will deliver when the time comes. Apart from each stroke weakening mum further, there is no sign that she is actually in any discomfort, distress or pain, so I don't believe she is ready for this yet. I do already have a DNAR form and both regular carers know where it is and that any ambulance crew that may have to be called if I'm out should not take mum anywhere. One of the things on my list for my next visit to the GP is to discuss how I can stop them taking her away! The last time, one, of the parademics, quite rightly I suppose, seemed a bit prickled by my upfront statement that mum was not to be hospitalised, but once they saw the DNAR form and I explained some background, they completely understood. But, they had to speak to one of our GPs to get confirmation that they were happy for her to not be taken to hospital. I was going to ask the GP if I could have some kind of signed form, or something I could wave at them next time which gave me support from the GPs/surgery for not taking mum to hospital - or, it may be that they will need to call them each time on a case by case basis, should I ever need to call for their help again. I probably should have called for an ambulance on Friday when mum had the fall, but I managed to get her in a position so that I could hoist her into her wheelchair - I know they would have taken her to A&E as she had bumped her head. My problem is that I'm on my own here with mum and apart from the care agency, there is no one else who could help me transfer/lift her if something out of the ordinary happens, so there may still be times when I will have to call for assistance, though if she spends more time in bed now, then there's less chance of us needing that.

What to do, apart from carry on? After that last parademic visit, I did have a call from one of our GPs asking if I "needed any more help from them", so I suppose that was the prompt to see if things had progressed to another stage or not. I really don't think mum qualifies for PC yet as she's not in pain or distress.

I will need to visit the GP again fairly soonish to discuss her diabetic meds (needing to be careful now as she's eating less all the time, so can't allow glucose levels to get too low), so will ask then what 'stage' mum needs to be at to qualify for PC.

I'm not particularly frightened of any of this - I think it's because I've been through so many horrors already with mum and this disease. It is of course very upsetting each time she has a TIA and a further decline, but I just go away and have a little cry, and carry on!

 

[Prudence9]

You know your Mum best Marnie, it is such a difficult call to make. I just remember thinking "She's going" one day (after the "backtracking" visit), so you go by your instincts.

Would it be worth asking the GP to visit anyway to just check your Mum over? You did sound very worried about her and maybe he/she could write an extra form of authorisation (is that the correct word?!) while they are there for any future Paramedics ,for Mum not to be taken to hospital?
Perhaps if they come out it would save you a trip to the surgery too to discuss her glucose levels while you're trying to keep an even closer eye on her?

Just ignore me if this sounds like nagging - I do have a tendency to go on

Yes, such a feeling of despair and loneliness at times - having sole responsibility for someone we love so much and with all the decisions we have to make and battling we have to do to get them the care they deserve - my heart really does go out to you......but Marnie - what a job you're doing! You are incredible.

 

[Norfolk Cherry]

A really helpful thread, thanks to everyone who posted on here, it relates very much to my situation. Marnie, a similar thing happened to me recently, mum fell but I decided not to take her to A and E or call paramedics for the same reasons. She wasn't in pain, no signs of broken bones. After many days trapped on wards where nothing really can be done, and MRI scans just tell us what we already know. It's so distressing for mum. I did take her to the GP on the Monday, and he found a UTI, so it might be worth picking up a sample pot and asking them to check it for you. Take care

 

[Marnie63]

I feel very unsettled tonight, I've done nothing much today bar pace around the house, doing nothing much in particular (in between changing mum and feeding her of course!). I just can't relax. It's always like this after she has another TIA, it takes a few days to know what you're left with. Unfortunately there's still no sign of any life coming back to her left arm, though she can grip my fingers, very faintly. She's very muddled tonight too.

I must try to stop pacing and worrying as there's nothing I or anyone else can do, but it's hard to settle. Usually I'm pushing her around the house in the wheelchair, or gardening while she's watching through the window in her armchair. It's weird having her in bed today, the house feels different, something feels wrong somehow.

I really am feeling sorry for myself right now, so excuse the self pity everyone! I might call the doc for a home visit tomorrow, depending on how things are tomorrow morning.

 

[Prudence9]

You've every right to feel that way.
Hope you can both sleep tonight xxx

 

[Amy in the US]

Marnie, I am sorry you are so unsettled and upset, but it is understandable.

I would urge you to put in a call to the GP tomorrow and update them, as well as to ask about extra help.

I have no idea what the qualifications are for palliative/hospice care in your area, but do ask the GP. Where I live, it's not reserved only for those actively dying, it provides other support for the patient AND their carers and family members. There is no harm in asking what may be available for your mum and we would hate to see you so exhausted that you cannot care for her or make yourself ill.

Having said that, of course you know your mother best and we all know what good care you are providing for her. I hope you can get some sleep tonight and that things seem clearer (if not better) in the morning.

Best wishes and many ((((hugs)))) to you.

 

[DollyBird16]

- my heart really does go out to you......but Marnie - what a job you're doing! You are incredible.
@Marnie63 I couldn’t agree more with @Prudence9
@Prudence9 bless you for sharing your experience, a really hard time for you.

I agree with advice get the GP out tomorrow, they can help you make informed decisions.

Take care. X

 

[DollyBird16]

Hi @Marnie63
I hope you managed some sleep last night.
I’m hoping the GP will be able to visit your Mum today.
Thinking of you. X

 

[Marnie63]

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.

 

[DollyBird16]

@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