Advice on Dad with Vascular Dementia

[eastanglia]

Hello All -

I have never posted before but only viewed now and then when worried about my father.

My father, who is 81, was diagnosed with Vascular Dementia approx. two years ago. He has been having memory problems since at least 2003. My mother, who is 81 also, is his carer and it is becoming slowly more difficult for her to manage as he has been having falls now and then and is becoming more and more unsteady on his feet. Last week he got on his bike whilst my mother was on the phone. (We have been trying to discourage him from cycling as he is really too unsteady but he forgets that he has fallen off before and thinks we are making a fuss and trying to curtail what little freedom he has left since having his licence taken away). He fell off the bike in the drive and then again this morning he had a fall in the garden when trying to mow the lawn. He seems to be ok, apart from a couple of cuts and scrapes and some bruising but I was wondering whether anyone has had similar experiences. Should we insist on taking the bike away? My husband suggested taking off a wheel and saying that we'd take it to be mended and then just tell him it's still at the menders if he asks. My mother is worried that he will get aggressive if she just gives the bike away or hides it in neighbours garage. (Dad was a great sportsman in his early years and has only given up golf in last five).

Also Dad seems to have had diarrhoea several times lately (over last month). Is this another symptom? I know that incontinence is something that may happen further down the line.

Guess I just needed to share and hoping for some words of advice. Not sure how long to expect Dad to last for - I find myself wondering whether it wouldn't be better for all if he had a heart attack and it was over quickly. It's something I feel he would agree with were he able to comprehend the situation. Hope you're not thinking that I'm unloving of him - he was the most fun Dad you can imagine and very intelligent. He's still the same in lots of ways but it's disheartening to think of what is ahead for us all.

I know that lots of you are in much much worse places than this and I hope you don't think I am not aware of that.

 

[Vonny]

Hi eastanglia and a warm welcome to Talking Point though I am sorry you had the need to find us.

I think your husband has it in one regarding the bike. We've all had to fib a little to keep our loved ones safe. Cycling doesn't sound safe for your dad at all and being creative with the truth avoids confrontation and agitation for the sufferer.

I'm sure you've read the factsheet on Vascular Dementia on the main AS pages, but in case you haven't, here is the link.

http://www.alzheimers.org.uk/factsheet/402

No one in their right mind would choose dementia for their loved one and I'll say openly that I hope a heart attack carries off dad before he develops it (my mum is the one with dementia), so you are not alone there.

Does your mum have support from Social Services and a psychiatric nurse? There is quite a lot of support out there but sadly you normally have to ask for it rather than being told.

Good luck

Vonny xx

 

[eastanglia]

Thanks so much for reply - glad to know someone else feels the same!

Yes Mum has the number of a nurse but she is very anti getting help as she feels Dad would hate it. When I've suggested enquiring about joining a club for other dementia sufferers/carers she says that Dad wouldn't go and would hate to be with people who were in a worse state than him and I must say I agree with that as he really doesn't understand that anything is wrong really. I refer to his 'memory problems' and have in the past told him about the diagnosis but he's always surprised and says 'that's news to me!' It doesn't seem worth pressing the point. I know there will come a time when they will have to have more professional help and anticipate a crisis of some sort being the catalyst for that.

Thanks again for your time and reply

 

[imac.girll1]

Hello eastanglia, and as Vonny says welcome along, you are not alone in anything to do with AD/VD.

My mother has Alzheimers and Vascular Dementia, and falling is certainly more prevailant in people who have this, this is my personal feeling not fact.

You are never aware when they have had another mini strole and quite often it can happen and no one even notices, not even the person, until the fall down or loses balance.

Also like Vonny, lying becomes second nature with this terrible disease, so I agree with her and your husband by taking the wheel of the bike saying it needs repair etc etc, and maybe look into maybe getting a gardener/handyman in who can help alongside your dad, explaining to this person that your dad will either hate him being there or look at him as if he is a junior and 'dad needs to tell him what to do'.

I think you need to sit your mum down with a cuppa and the nicest cake she likes, and without your dad around, maybe your husband could take him to the garden centre or something, and explain to mum that dad needs to be in company of people who have the same problem as him, and at these centres, or call them lunch clubs, it worked with my mother, now i cant keep her away!., with carers who know how to deal and talk to your father to get the best out of him, without a hissy fit etc. I am sure there are carers down there that my mother would love to have as a daughter on certain days when we have bad ones!

Your father may deteriorate quite quickly as VD tends to hit randomly and often, your mother needs to have time off for good behaviour herself, and few hours a week will be precious to her at her age, i know at 42 they are precious to me when mother goes to her lunch club.

She resisted big time at first, but agreed to give a 6 week trial period at one day a week, first week she was there one day and next week onwards has been there 2 days a week, this week as somepeople of the clients are on holiday they have offered her the spaces and she is there all this week and all next week, she loves it and has done since April when she first started.

Anyway I have rambled on long enough but dont be astranger on here, come on and tell us good and bad, we have all done it and there is always words of understanding and reasoning for our confusion and downtimes.

Hugs,

xx

 

[eastanglia]

Hello imacgirll1 - thanks so much for your reply and you've given me lots to think about. I'll look in to what clubs there are near my parents tomorrow and become a bit more pro-active.

Sorry to hear about your Mum - but it sounds like she's enjoying the lunch club at least. As you say - you must need a bit of respite yourself!

Best wishes to you.

 

[eastanglia]

Hello katie123

Sorry to hear about you Dad too. Thanks for that advice - will look into the OT and also mention diarrhoea to GP.

Best wishes to you

 

[Nan2seven]

Hello eastanglia - my husband Brian was diagnosed with vascular dementia in February of this year. He also has heart and kidney problems and leukaemia. When he came out of hospital in February following a major stroke, he too was having bouts of diarrhoea, due in part, I think, to all his medication. Some doses have been reduced over the past couple of months and the bouts have eased up a bit. I found that A---a's anti-diarrhoea capsules at 99p. per pack of six worked a treat for Brian and his GP was quite happy for him to take them when necessary. Thought I'd mention them in case they help. Love, Nan XXX

 

[eastanglia]

Hello Nanoseven -

Thanks so much for your reply. So sorry to hear of all your husbands problems - it's very kind of you to reply when you have so many troubles yourself. Will keep in mind those tablets - good thinking.

Just checking in to see if there were any more replies to my post this morning before heading off to spend the day with my parents and an elderly Aunt who is moving to the same town as them today. It's my mother's sister so hopefully she will provide some moral support to my mother and be someone to sound off to when necessary.

Best wishes to you and thanks again

 

[sussexsue]

Hi eastanglia

Just a small thought, and I know it is different for everyone. Until mum came to live with us, she lived very near my brother who kept an eye on her, and went to all medical appointments with her. They both kept up the pretence that she had a "little memory problem".

However when she came here I insisted on saying that she had Alzheimers, she was a bit shocked at first and felt sure I was wrong, but I kept repeating that it was just a name for an illness, just as her "bad knee" is arthritis. I also stressed a lot that I was so glad it was that and not something that meant she was in pain and couldnt get out and about. Was always very positive about it. Point being that once the disease had a name it was much easier to get her to accept help and deal with all the services involved.

She now goes to Alzheimers Day Care one day a week, although we tell her its Alzheimers "Club" as opposed to Day Care. Between the family we call it Playgroup, especially on the day she proudly came home with a paper plate she had decorated She loves it, especially as she is so much better than many of the people there, and therefore believes her illness is not as bad as it could be.

Agree the bike has to go, maybe saying it is away for repair after he fell off it last time. These repairs can take a VERY long time.

Good luck

 

[Dorothy W]

Hello All -

I have never posted before but only viewed now and then when worried about my father.

My father, who is 81, was diagnosed with Vascular Dementia approx. two years ago. He has been having memory problems since at least 2003. My mother, who is 81 also, is his carer and it is becoming slowly more difficult for her to manage as he has been having falls now and then and is becoming more and more unsteady on his feet. Last week he got on his bike whilst my mother was on the phone. (We have been trying to discourage him from cycling as he is really too unsteady but he forgets that he has fallen off before and thinks we are making a fuss and trying to curtail what little freedom he has left since having his licence taken away). He fell off the bike in the drive and then again this morning he had a fall in the garden when trying to mow the lawn. He seems to be ok, apart from a couple of cuts and scrapes and some bruising but I was wondering whether anyone has had similar experiences. Should we insist on taking the bike away? My husband suggested taking off a wheel and saying that we'd take it to be mended and then just tell him it's still at the menders if he asks. My mother is worried that he will get aggressive if she just gives the bike away or hides it in neighbours garage. (Dad was a great sportsman in his early years and has only given up golf in last five).

Also Dad seems to have had diarrhoea several times lately (over last month). Is this another symptom? I know that incontinence is something that may happen further down the line.

Guess I just needed to share and hoping for some words of advice. Not sure how long to expect Dad to last for - I find myself wondering whether it wouldn't be better for all if he had a heart attack and it was over quickly. It's something I feel he would agree with were he able to comprehend the situation. Hope you're not thinking that I'm unloving of him - he was the most fun Dad you can imagine and very intelligent. He's still the same in lots of ways but it's disheartening to think of what is ahead for us all.

I know that lots of you are in much much worse places than this and I hope you don't think I am not aware of that.

I Know just what you are suffering. You could be talking about my hudsband.
He is 87 now and I am 85. He started with vascular dementia about 2003, so I have had the care of him much longer. All I can say is that you are lucky your father only wants to ride a bicycle - my husband want to use his CHAIN SAW! I keep telling him he is out of oil for it and, so far, he has bought four new supplies of oil. Do you know anyone who wants four bottles of chian lubrcating oil?
It is usually a case of laugh or weep. So far I have managed to only weep once, but it gets harder.
Dorothy W

 

[eastanglia]

Evening everyone - thanks for your replies sussexsue and DorothyW. More to think about thank you for that.

Dorothy - you are doing well to be posting on here at your age - I wish my mother would be a techno-friendly - I'm sure it must be a small comfort to you to chat on here with others. I'm not the main carer so don't really fully appreciate what it must be like to be with a sufferer of dementia for 24hrs a day.

My father had a circular saw in his garage and we have managed to put it against the wall so that it is unable to be used. He was like you husband in that he was wanting to use power tools until recently but seems to have given up attempting to do that sort of thing. Not sure if he realises he's just not up to it anymore or if it's my mother's constant nagging that has done the trick. It's very sad to see a once extremely capable man becoming more and more dependent. My thoughts are with you both (sussexsue and DorothyW) and you just have to keep going - one day at a time as far as I can see.

Bestest wishes to you.

 

[SusanB]

Hi eastanglia

Just thought I would say hello and find out how you're getting on. I'm a regular reader of the forum but only an occasional poster - I'd like to post more and should make more of an effort!

My Mum also has vascular dementia, officially diagnoised two years ago. Today, the phone calls from her started at 8.00am. I went over there this afternoon to supervise the pest control people (lovely chaps) removing a wasps' nest and was there for three hours, slowing losing my mind as her anxiety went into orbit.

After I'd left (all sorted) she apparently left 11 answering machine messages on my sister's answering machine regarding her pension - she gets sent it through the post through Recorded Delivery. We have evidence that she signed for it this morning but evidently she has hidden the cash in the house somewhere. The "I've got no money" phone calls never stop.

She called me AGAIN AND AGAIN today, just sounding like a mad old woman, laughing inappropriately, telling lies, making things up, repeating repeating repeating, not understanding what I was saying to her.

Sorry - hijacking your thread.

Anyway, what I wanted to say that a sudden, swift and fatal heart attack would allow me to get my life back so I know how you feel a little bit. I really do want my life back. I don't like her much and I'm hoping this happens soon. Don't be shocked everyone, not all parents are nice people, my Mum certainly isn't.

Typing this as 5.30am, been up since 3.30am with the stress of it all.

Susan

 

[imp]

Reading all your posts is like looking at our life too. My jusband is almost 90 and I am 80 and each day is a struggle, mostly mentally, as I have got help morning and evening. I hesitated for months before taking help from SS as I though that he would hate it but he has accepted his carers even to the point when I now have 5hours a week with a sitter so that I can go out. Like others he is still claiming that he is able to look after himself and life does seem to consist of tell ing little white lies to shield him from harm. this has to be one of the worst diseases to deal with as each day brings a new problem but it is amazing how we manage to find a way to deal with things. I can only say good luck to you all Iris

 

[NewKid]

I must say I wish my Dad (who was techno-friendly) had discovered TP when he was the main carer for my AZ-suffering Mum. The realities of 24/7 responsibility and the related stresses and utter despair at times must be so much better shared. Including the funny sides of the illness - Dad and I used to often roll our eyes at each other when I visited - it kept us sane.... It could really be liberating for your Mum if you could help her join us? But great news about her sister coming to town, as much moral support as possible needed as I am sure you do not underestimate the toll this could take on your Mum's health otherwise... I am as ever both touched and humbled by how much partners on here put in. Keep well all of you and good ideas about the wheel and the oil (X4) ...

 

[thatwoman]

Hi Eastanglia,
I'm also fairly new to posting and have a dad with vascular dementia. Reading this thread I keep wanting to say "Me too" to everything!
With regard to the diarrhoea (a word I can't spell!), I took my dad to the doctor with the same problem yesterday. The doctor diagnosed constipation and said it was very common in older people. I won't go into the gruesome details, but apparently it makes sense and once the bowel is regularised he shouldn't have the runs any more.
We've had to hide dad's car keys because he can't remember being told he can't drive and gets violent if we try to stop him. (We've also put a crook lock on the steering wheel in case he manages to find his spare keys!)
Until this year I used to try to tell the truth, but now lying is second nature to me. I try to tell myself we're just being creative. Who knows, when this is all over maybe we'll all become famous novellists!
Hope you're having a good day. I'm getting my one whole weekend without care responsibilities starting tomorrow night. I dare not plan anything because if anything happens to either my father or my mother-in-law and prevents us from getting away, I might not be responsible for my actions . And I might not be joking.

Keep on keeping on,
Sue

 

[jenniferpa]

The thing that Sue is talking about I think is also called faecal impaction. Have a look here and see if it rings any bells.

http://www.bladderandbowelfoundation.org/bowel/bowel-problems/constipation/faecal-impaction.htm

 

[eastanglia]

Hi there all -

Sorry been busy today so haven't had time to post until now. Thanks for all your posts everyone - it really helps to know that others sympathise and that all over the country there are people sitting in front of their computers like me

Lots of interesting posts thanks to you all.

A quick up-date - I went over to help with the move of my Aunt yesterday and left at 6pm. After I left my aunt ate with parents and apparently during the meal there was an altercation between parents - mum playing it down today but Aunt saying that she thinks my mother is frightened of Dad at times. It pushed me to phone social services who are going to visit them and do an assessment - I think it's about time that we moved on a stage and Mum needs more than moral support now - hoping that they'll come up with a few ideas - maybe someone to help with washing him a couple of times a week? We'll have to see. He's 6'2" and shes 5'3" so she really cannot manage him if he falls. Going again on Monday to see them and siblings visited today and will on Sunday so we are tying to help out more too. It's very sad as Dad has always been a very peaceful person - but full of fun -he had four children and never smacked us as doesn't agree with corporal punishment - yet he's becoming aggressive verbally to Mum and has held up a stick to her in the garden in a threatening way. I think he's just so frustrated at being told to not do this or that when he just wants to carry on doing the usual things but just doesn't have the ability any more.

Heard interesting programme on Radio 4 today though - woman's hour and is was about giving a memory box to dementia sufferers. Listen again online if you can - it was very moving and interesting. Thinking about doing one for my pa. Must make up a photo album for him to keep by his chair too. He often reminisces (spelling?) about old relatives that died years ago and asks what happened to them. It might make a good talking point as I find it more and more difficult to think what to chat to him about.

Any thoughts?

 

[fredsnail]

My Grandad has 3 photo albums - one done by his neice of older generations of family, one of his friends and one of close family - photos through out the years including one of him when he was 2 or 3 (he's 97 now), and his parents.

The carers sit with him going through the albums and allow him to reminise.

Many of the older photos were originally about 2 x 3 inches - but I've blown all of them up to A4 size so he can see them easily - and we've put some of his favourite ones in frames and the home have hung them on his room walls.

 

[eastanglia]

Hi fredsmail -

Thanks for reply - that sounds like a great idea! Will set to it! Am going over again on Monday and will look out all their old photos and get started. Thanks for giving me the impetus!

 

[Palamino2]

Money money money

Sorry I am hijacking your thread too

Susan B

Your thread hit a nerve - my Mum is constantly on the phone about money (a) she hasn't got any (not true), or (b) she can't find it. It is relentless. The phone calls are so repetative, mostly about money, or that my Dad it at the pub again (he has been dead 2 years (god bless him) or when is she going home to see her mam and dad (they have both been dead 30 yrs). Yes the lies and the repeatativeness is all too much sometimes.

I absolutely loved my Mum to bits but this alien has taken over her mind and body (and I just want to run away and never see her again.)

I am having a bad day - sorry everyone - I feel such a bad person sometimes - I have such bad thoughts.