Nightmare of a day

[LynneMcV]

As days go, today was not a good one.

It began with juggling umpteen things

* Get son to train station
* Get daughter to hospital for physiotherapy appt
* Go home, make sure hubby is showered, dressed and has had something to eat before he heads off to his Monday group for people with early onset dementia
* Rush out, go to local travel firm to book some day trips my husband can enjoy over the next few weeks.
* Rush back home - then go and pick up daughter from hospital

Small respite to grab a cup of tea and have a quick chat with daughter and mention I need to chase up arrangements to organise a volunteer driver for husband to make his travel to his Monday group easier. Oh how prophetic those words were!

* Phone rings - large supermarket near where husband's group meets (two minute's walk away from the group, if that) rings to say my husband is with them and lost. I explain he has dementia and that I'll contact someone at the centre to walk around the corner to get him
* The lady on phone says he should have card on him with telephone number. I say he has a dementia card in his wallet - they say they couldn't see it. Meanwhile I am impressed that he has remembered what his home number is.
* Make phone call to the group leader and she says she'll go and get hubby. Shortly afterwards she phones back and says all is ok. He'd stopped to help a lady who had fallen - then got confused about which direction to go so went into the superstore to ask for help (well done that man I think to myself, he followed the strategy I had given him should he ever be lost - go into a shop and ask for help!)
* Group Leader says hubby must have card on him with contact details. I say he has.but she sounds unconvinced.
* Group Leader says she is worried about his travelling. I say two drivers from our town are in the process of being vetted and will be available from 30 March. I say that to make sure there are no more travel issues I will not send him to the next group on 16 March - and will wait until a driver is allocated on 30 March. This seems to appease situation
* Group Leader rings back shortly afterwards and says hubby's condition has gone downhill since he first started attending last year and the group may no longer be suitable for him! She says we can go to another group nearer to us - but I have to accompany him all the time and stay there!

I am on the verge of exploding by now

* Yes my husband's condition has deteriorated since last year but he is still very capable in many things and doesn't need someone by his side at all time.
* Yes, he is becoming more confused about directions but I don't see why he should be forced out of a group he enjoys because of this - especially as I already have arrangements in place to address that.

I point out that he is very active in the group (she agrees), that he participates in all the activities (she agrees) that he socialises well (she agrees), that he enjoys his meal there and feeds himself without any problem (she agrees), he has no incontinence issues (she agrees) - that he loves being there and he understands what he is expected to do (she agrees) - that he doesn't sit on the side just watching or asking to go home (she agrees). That he is helpful and always willing to assist if necessary (she agrees).

As she agrees with all the above and the only real worry is the travelling, I say yet again that there is no reason for him to leave the group. To move him to a group where I have to be by his side all the time would

* deprive him of his independence and enjoyment for no reason.
* lead to me having no time to do the things I need to do such as visits to the GP and hospital for my own health issues
* be impossible for me to do anyway, as I have to work (or the mortgage doesn't get paid - such is one of the obstacles when someone of younger age (and still of working age) gets dementia

The Group Leader agrees to leave things as they are and see how the volunteer driver situation works out

I end the call in a hurry - by now it's time for me to head off to the nurse for a booked blood pressure check - unsurprisingly it turned out to be extremely high.
The nurse took my blood pressure several times, making me change position, breathe slowly, relax in the chair. Nothing worked - it remained extremely high. I explained I'd had a stressful morning entailing a missing husband and stressful telephone conversations. As as result I must now go back again in two days to have it checked again!

The session took much longer than I planned. I now had to rush to the pharmacy to get my medication.

Next I rush to the bus stop and stand in the freezing cold, waiting for my husband's bus to arrive.

It arrives and he gets off, happy as can be - totally unaware of how close he has come to losing his place at his favourite group - all because he stopped and helped a lady who had fallen and got distracted from where he was heading.

He hands me a card - it is another dementia card for me to fill in for him. I look in his wallet - the dementia card, complete with all my contact details is in it, just like I said!

I can't be bothered to argue any more - the group leader obviously hadn't taken me at my word and I am not sure if she even bothered to check.

The wind is biting cold so I lead my husband back to the car and we head home for a cuppa and a warm-up. He has great delight telling me of his good deed to help a lady who had fallen. He knows he got lost shortly afterwards but is happy he remembered our telephone number and that he remembered to seek help in a safe shop.

Tomorrow I am back to work - I need it for the rest! I'm still worried that hubby will lose his place at his favourite group - but glad they'll at least give a chance for the travel plan to kick in first.

 

[chris53]

Oh Lynne, need to send you a big hug am pleased hubby enjoys his group but boy does this group leader need a good slap or what.. I hope she has had dementia training but does sound rather patronising, it seems more difficult for younger people to be able to join groups not much about me thinks she may have had a bit of a shock when she saw hubby was not there and then decided to cover her back by waffling on and on
Hope you are having a better evening
Chris x

 

[Loopiloo]

Hello Lynne, what a dreadful day you have had. That group leader does not sound to have had dementia training… Or perhaps Chris is right about her covering her back. Since it seems obvious that she did not look in your husband’s wallet for the dementia card I suspect the latter

Whichever, I hope your husband does not have to stop attending his favourite group due to her. Hopefully a volunteer driver will be sorted out.

He did well to remember your telephone number and to seek help in a safe shop. My husband could be as sharp as a razor about some things in the early stages and yet the opposite concerning others.

My husband has had vascular dementia over 12 years, it is well-advanced now, and we are a lot older than you and your husband. Although the very earliest sign of dementia probably started years earlier after he had a stroke a few months after his 62nd birthday. Memory problems and personality changes. Looking back, those years and then when the dementia took hold were the most difficult. When he was still in many respects the man I married, but changing and changing. Sorry, I digress. I do feel for you.

I am glad you found TP so soon after your husband's diagnosis, although sorry dementia came into your lives and brought you here. I didn’t find it until some years after my husband had dementia. It is such a wonderful forum and has been a lifeline for me as for many others.

I hope you feel the better of writing about your nightmare of a day, and it is a good reference back to what you have written should that group leader present any problem - hopefully not. But at the time it is such a worry and so stressful. I hope your evening has been better.

Loo x

 

[vonvonvon]

Morning Lynne

I cant even start to imagine what you went through yesterday ( I'm the sufferer, is that the right word ?)
I hope that you have a better today & tomorrow..... & even the day after
Take care
Yx

 

[LynneMcV]

Thanks Chris, Loopiloo and Vonvonvon for your comments, hugs and good wishes (they were much needed!)

I'll probably ramble on a bit here and repeat some stuff from yesterday - but, as has already been said, this is a good way to keep a record of what happened and what I need to raise if I am ever called to a meeting about the matter - so ignore my witterings

I am feeling a little less stressed today thank goodness. I'm due back to the GP tomorrow where I am hoping for a more acceptable blood pressure result after yesterday's fiasco!

I know deep down that the Group Leader was well-meaning - but yes, she has said directly that she has to raise these issues of concern to protect herself - and as far as I can see that is what is what is blinding her to the strengths we can still work with.

I think the problem is that we are coming at this from two different angles - the red-tape / form ticking / report every incident routine from their side against my role as the wife / carer.

I know my husband better than anyone meeting him fortnightly at a club meeting - as lovely as they all are.

In order to protect themselves there seems to be an attitude of 'take it away before it gets broken' - it's a knee-jerk reaction.

I have gone over and over the events of yesterday in my head and remain satisfied that my husband showed capacity and followed sensible strategies throughout.

Most importantly I think anyone working with people who have dementia should remember above all things that everyone is entitled to a mistake without automatically being labelled incapable.

Why I know my husband is still capable of being out and about alone:

• He caught the right bus (shows mental capacity)
• He overshot the usual bus stop but realised immediately and got of at the next possible stop (I don't know about you, but I have missed bus stops from time to time over the years and don't consider that it makes me incapable of travelling alone) - as far as I can see, this shows he has mental capacity.
• He spotted someone who needed help. A lady had fallen over and he helped her up. That is the kind person that he is and one of the things I love about him. Seeing someone needing help and going to give it, in my book demonstrates mental capacity.
• Yes, after unexpectedly having to play the good Samaritan, he then lost his direction a bit (but not completely) - he knew to head for this very large supermarket which was more or less next door to where he needed to be (that shows mental capacity).
• Having since chatted with him I now know that his difficulty was in the fact that he had tried to cut across the supermarket car park to get back onto the pavement which would lead him to his destination. Unfortunately the car park is huge and he was unable to find a pedestrian exit towards the pavement - and that is when he went into the supermarket to ask for help (shows mental capacity)
• He was able to provide his name, address and phone contact number from his own memory - this is how they were able to reach me (shows mental capacity)

It seems to me that my husband demonstrated good, sensible strategies throughout. The fact that someone eventually had to walk around the corner to collect him has been blown totally out of proportion to the point where they have not considered all that he did correctly as listed above.

I believe it is my role to encourage his confidence and support him remaining independent as long as possible.

I know he loves his bus rides and popping into the shop on the way home after getting off the bus. He doesn't need me by his side at all times and no way am I going to tell him that he can't do these things on his own anymore - that time will come soon enough, and it certainly isn't now.

I don't envisage hearing from the Group Leader again about this matter any time soon - but I am ready to argue it out further if I have to

 

[Loopiloo]

I don't envisage hearing from the Group Leader again about this matter any time soon - but I am ready to argue it out further if I have to

Let’s hope that will not be necessary and that the Group Leader sees sense. If not, what you have written about covers everything and presents a strong positive in your husband’s favour.

Loo x

 

[kingybell]

Sounds all too familiar. Young people with dementia fall through the cracks of the system in early stages. Sounds like a caring chap who was doing a good deed and this horrible disease stepped in got him all confused.

I know dementia and people's lack of understanding can be frustrating but this forum is a god send. I could see from your message you wanted to get this off your chest.

I am making it my mission to educate as many people as I can on how to help and manage people with this disease. It's not just an old person's problem it affects all age groups..