House of Cards in a Storm

[TONY GEE]

I am not sure where to begin so i'll just start somewhere and circle round for a bit. Thanks if you can bear with me. My question by the way is do you have any suggestions as to how to improve the situation?

My Mum 82 years old was finally diagnosed with Mixed Dementia about a 2 months ago. She has been diagnosed with a number of health problems in the last year:

- circulation problems - she's been on warfarin for 6 weeks
- irregular heart beat - beta blockers for about 3 months - just moved to stronger ones
- type 2 diabetes - about 12 months
- ruptured capillaries and cataracts have reduced ger eyesight - minimal in one eye since last October
- longer term she has had high blood pressure for some years

She also has a history of falls. She was treated by a falls clinic 5 or 6 years ago and this saw a dramatic improvement. However she fell again at Easter and for a second time about three weeks ago. Although she attended A&E the second time she wouldn't go to her GP and my parents concealed both falls from me and my sister. Her main carer at the memory clinic is very concerned and has written to her GP recommending a referral to the falls clinic again and stating she thinks my mother is at risk of a "fatal injury" if she falls again. None of this information about falls has been volunteered to me but has leaked out more from my Mum than my Dad.

My Dad who was 80 in June is her main carer but realistically they care for each other, two playing cards leaning on each other.

My Dad has restricted mobility due to serious arthritis - he can get about but I think its more painful than he lets on. When he finally had a full assessment last year they said serious deteriorating arthritis in both knees, ankles, shoulders elbows etc - i.e. most major joints.

He has significant hearing problems, finally got hearing aids last year - a whole Norse Saga in itself.

Was complaining about his own memory for about 2 years until my Mum got diagnosed. Now he has lost all interest in discussing it and denies he has any issues. In truth it seems minimal at present but he's probably masking as my Mum did for several years.

My mum won't take the ALZ medication suggested by her memory clinic, the only reason she'll give is she wants to wait for the Warfarin to settle down. They are going to discharge her to the care of her GP in 2 weeks.

They live in a three story terraced ex-council town house which they own. My sister and I have been trying to persuade them to move for 5 - 10 years but with no success. The obstacle is my Dad who won't sleep anywhere other than his own house. Last holiday was 30 years ago. He has spent a night away only for my wedding 15 years ago and twice to make it to Xmas Day at my sisters house.

My Dad says he thinks the carer was being overly Dramatic in her assessment about the fall risks. My Mum says she's not too bad, "you should see the others, they burn their food and lock themselves out of the house, I am not that bad!!"

I am filled in equal measure with furious admiration at their tenacity and despair at how to get them to move house before they literally kill themselves falling down the stairs!

Does this sound familiar...any ideas?!

Also I am moving away and will be about 2.5 hours drive away, currently only 45 mins by car or public transport. This is unavoidable due to financial circumstances. So feels even more acute. My sister already lives a long distance off and there is no other family nearby.

 

[Grannie G]

Hello Tony

I love the analogy of your parents propping themselves up like a house of cards and sadly it`s what happens when couples age and don`t want to be separated.

It`s a dreadful thing to say but I don`t see an alternative other than to tell them you hope they will tell you when they feel they need help, do whatever you can, then leave them be until the time comes.

When you move you could inform Social Services [ SS ] and tell them your parents are vulnerable and possibly at risk. SS have a duty of care when vulnerable people have no support , although I`m not too sure of my facts when people are self funding, if your parents would be. Perhaps another member will know better.

It is extremely worrying I know .

 

[jaymor]

Hello Tony and welcome to the forum.

I agree with Grannie G, as hard as it is you can't make your parents 'see sense' you can just be there to catch them when things fail.

As you are not going to be there , again your options are limited. Other than to advise the relative authority (SS) that your parents are vulnerable and at risk, again it is a sit and wait situation.

Would your parents accept carers coming in daily? Maybe in the morning to make sure they are ok, have had breakfast, shower/bath and medication. Lunch time and again in the evening for help preparing for bed and medications if necessary. They will probably be very short visits but at least someone who can see how things are going and get help if necessary.

It is wonderful that they are so dedicated to helping each other but at the same time a nightmare for those who have to stand back and watch knowing there could be a crisis just around the corner.

Good luck and keep using the forum, lots of advice and support here,

Take care

Jay

 

[Rageddy Anne]

You must be so worried about your parents, Tony, and proud and frustrated in equal parts. I haven't any suggestions to add to Grannie G's wise words, except to say I've known several people whose Blood Pressure medication lowered their blood pressure a bit too much, which actually led to falls. Your Mother is on quite a mixed bag of medications, and of course we must assume the prescribing GP has taken everything into account, but might it be worth asking?

A friend of mine lent me a Blood Pressure monitoring device, easy to use, and it has shown that I was over prescribed.

 

[Pickles53]

Hi Tony and welcome. I am a long way from my mum who still lives alone. Would you parents consider having an emergency alarm system with wrist or pendant button so that they could call for help in an emergency especially if have fallen and can't get to phone?Also a key safe outside so the paramedics can get in if needed?

My mum was not keen but I persuaded her because she kept saying that she didn't want me to worry about her and I told her this way I would worry less. Eventually used the same argument to get her to have carers in twice a day but this took longer

Do they have any neighbours or friends who visit regularly and could 'tip you off' if they spot any problems? I gave my phone number to several neighbours/friends and asked them to call me if at all worried. This has turned out very helpful as mum would rarely tell me herself (eg when she fainted at church a few months back).

 

[TONY GEE]

Deja Vu

Thanks everyone for your feedback and ideas. I am finding it really upsetting. My Mum's older sister and her husband went through much the same experiences my Mum and Dad may be facing.

My Auntie and Uncle died in 2011 my Uncle in July and Auntie in October they were about a decade older than my Mum and Dad. He had advanced Alzheimer's, was Greek and had stopped speaking English although he'd been in UK more than half his life. My Auntie had fallen repeatedly over several years and had broken hips that never healed properly for the last 7 or 8 years of her life. They also had a range of other health problems. My Mum and Dad were carers for them visiting 3 or 4 times per week although in their 70s. They also had daily nurse and home help visits.

When my Auntie had a bad episode of pneumonia in 2011 she was hospitalised and my Uncle had to go into a care home as he couldn't cope alone. It was a chaotic time I was visiting my Uncle regularly as nobody else could get to the home and trying to see my Auntie too.

My Uncle couldn't cope with the separation and died of a heart attack after about 3 weeks. My Auntie only saw him once in that 3 weeks and he was really upset when he had to go back to the home. She had to go to his funeral from hospital. When she was eventually discharged she was rehoused from a sheltered flat she had lived in with my Uncle to a care home as her health had deteriorated.

She was only settled there 3 weeks before she was rushed back to hospital with a chest infection and died a few days later. I was there a lot helping her move in and doing practical stuff. I made it for one visit with my young children in that 3 weeks and we had a picnic lunch in her flat. My Auntie was always very sociable and loved having lunch with us and its now one of my fondest memories of her.

That summer I was very busy visiting in hospital, I helped organise the funerals and the flat move and housing clearance for them, all the family pitched in. Emotionally it was all a bit draining, especially trying to support my Mum who had lost her big sister and my Dad who had become very close to them both. It was my first experience of being with family on their death beds, it was really sad but comforting to be able to keep them company at the end.

Seeing my parents at what looks like the start of similar failing health is really hard. I am sure its incredibly tough on my Mum and Dad but they don't open up about how they feel. My sister is better than I am at offering help and accepting they will do it their way.

I know all I can do is stand back but its just really heart breaking. I am dreading the falls, injuries, confusion, pain and eventually the funerals and house clearance and grief. My parents have become more and more withdrawn since my Auntie and Uncle died and so I feel like I am already losing them, especially as my Mum has really lost her confidence with all her health problems and seems less herself with the dementia. It’s so sad to witness and not be able to do much.

 

[sistermillicent]

It's a dreadful thing to witness and it's so frustrating and painful when all change is viewed as impossible. My dad eventually accepted some help but caring for mum is taking a terrible toll on his health.
I did eventually come to the conclusion that this was my parents' marriage and their business, not mine. I now stand on the sidelines and visit a lot less, but occasionally have to drop everything for a crisis. It has been like that for some years.
I have not given up on suggesting things, sometimes an idea takes root and grows in dad's head and he then comes up with it some time later as being his own.

It is a sad existence, but the single most important thing in the world to Dad is to continue looking after mum and living with her as much as possible. I can't take that away from him just because I don't want the worry of it.
(though talk to me when things are in crisis mode and i will say something very different and be very angry about everything.)