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Parkinson"s and newly diagnosed elderly dad

(17 Posts)
Lweji Wed 15-Jun-16 07:26:10

Not even sure what to ask, but I didn't find any recent threads.

80 year old dad was finally diagnosed with Parkinson"s after struggling to get a diagnosis. He has also developed hyperthyroidism and was diagnosed a couple of years ago with prostate cancer, but not aggressive and it's been controlled and it's monitored. He also struggles with low blood pressure and high pressure spikes.

Anyway, he had a big fall recently and ended up with stitches on his face and sore hips.
He's been spending the last few days in bed and struggling to move.
Mum is healthy but 75 years old and doesn't drive.

What is most striking and worrying is how fast he's gone down. He's always been very active, as much as possible in and out of the house, driving and helping the grandchildren.

A couple of weeks ago we were trying to be sensitive about not letting him drive and now I'm looking at equipment to ease life at home. (I'm the practical type in a crisis)

He's just starting treatment. Literally days for the thyroid and a day for Parkinson"s.
So, one question that's been in my mind is if you have/had an elderly parent with Parkinson"s, did you see any marked improvements with treatment?

We are also supposed to have a big and once in a lifetime family lunch and I hope he feels like going and is well enough to.
My mother is the one mostly struggling and finding it all very difficult, but she's had (and having) to deal with the worst and aspects that we are only being told about now.

They are financially comfortable, which is a good thing, and she's found paid help, but they're also privately paying for care of frail centenary grandmother. She's not getting visits from her daughter at the moment either, due to the problems with my dad. So the whole thing will need some coordination between us, siblings (3).
We all have young children, although two are 14 and 11. I'm already having chats with ds (11) about helping grandparents on occasion now that they are on their summer holidays (not UK, btw). Mostly little things like getting the newspaper, but I also feel odd about putting that responsibility on him, although he seems to enjoy running errands. smile

Thanks for reading this far.
I suppose I mostly want to have a feel for what to expect and how to best deal with it as extended family.

Thistledew Wed 15-Jun-16 07:36:30

I'm sorry to hear of the diagnosis.

My dad was diagnosed with Parkinson's just a little later than yours - he was about 86. He had had a pacemaker put in but was otherwise in good health. His Parkinson's is a little atypical in that he does not have any tremors, but does suffer from muscle weakness and stiffness. He had also had a few falls, which was one of the things that led to the diagnosis.

In his case, the medication didn't really produce a improvement, but has certainly slowed the progression of the disease. He is now 92, and has unfortunately shown a bit of a decline recently, but up until the last 4 months or so has been relatively stable. It is difficult when they are at an advanced age anyway, because you can't always tell what is deterioration due to the Parkinson's and what is due to simple old age.

flowersfor you and your mum.

Lweji Wed 15-Jun-16 07:52:16

Thanks, Thistledew.
Sorry about your dad too.

My dad doesn't seem to have the tremors yet either. It's mostly stiffness and balance problems as well. Fingers crossed medication can help, but I'm worried it won't either.

Rubberduck2 Wed 15-Jun-16 07:52:42

lweji I'm sorry to hear about your dad. My dad is 69 and was diagnosed with Parkinson's a couple of years ago, and the previous year before that he was diagnosed with prostrate cancer so I understand how you feel!!

I find with my dad that treatment effects vary up and down and that some days are better than others. He is often much better first thing in the morning but goes rapidly downhill at around 10/10.30 which frustrated him massively. If we have any special meals he tends to make a massive effort for that but is then wiped out for days after.

I've watched my dad go from a strong, active man to a shell of who he was and its bloody cruel, however he still has his sense of humour which is a blessing!

My mum was then diagnosed with lymphoma in March last year, but ironically she has powered through chemo and done very well all because she wants to look after my dad.

We are not at the stage of needing carers, however he now has all over body shakes when really bad compared to say last year where it would just be his legs.

I don't really know why I started this post, I guess I just wanted you to know that you're not alone in this - you just find a way of coping in the end. I have a DD9 who he adores and another one on the way so I'm hoping that that will give him encouragement to stay positive and bright.

Love to you and your family and a bloody big hug flowers

Lweji Wed 15-Jun-16 08:21:16

It's much appreciated, Rubberduck2. smile
And flowers for your parents too.

It's at times like this that I'm glad I've moved back home, as I lived in the UK for over a decade.

I wonder what type of equipment was found to be most helpful, if anyone uses any.
I'm looking at toilet aids, but not sure if chairs or just raised seats.
Are bed guards useful?
Any experience of walkers or walking sticks?
Rotating chairs for baths or cars?
I'm going to discuss this with my mom, hopefully today.

Costacoffeeplease Wed 15-Jun-16 08:27:34

My dad was diagnosed with Parkinson's in his 50s, he's now mid 70s. The medication has helped, he's also had brain surgery (in Hospital São João in Porto).

He also has stiffness rather than tremors but so far doesn't use any aids, except occasionally a wheelchair or wheeled walker

Our situation is different so I don't know if I can be of any help?

Thistledew Wed 15-Jun-16 09:51:23

My parents have had various grab rails fitted in their house-

By the shower
Next to the bed
Handrails both sides of the stairs
By the front door

There are raised commode seats (on frames so removable) on the toilets

Higher than normal bed and chair - although a tilting chair was no good as he needs to be able to get his feet under him in his own time. It is important for all chairs, including dining chair, to have good firm arms that he can use to push himself up on.

Around the house he uses two sticks (or more recently a Zimmer frame).
When he is up to going out into the garden he uses a wheeled roller similar to this, or now a wheelchair for longer distances.

Bed guards are not advised, as they mean that he would have to be more precise as to how he gets in and out of bed, which would be a struggle.

Lweji Wed 15-Jun-16 11:07:05

Thanks both.

I looked at a retractable bed guard. He does have a history of falling out of bed, which is not helpful, but I see what you mean.

Coffee, I am in Portugal as well, and it's always good to have local experience. Are you familiar with the Parkinson's association? Any useful?

I had a brief chat with my mom by phone and she keeps resisting the idea of equipment to help and complaining that nobody cares about how little sleep she's getting at the moment. She does have a tendency to complain about how anything that happens to others affects her (mostly how the worry affects her), which is not helpful. It's going to be hard, but at least there are three of us and we all live within 10 min of each other. smile

Costacoffeeplease Wed 15-Jun-16 11:10:39

I think the Parkinson's association can be useful for those recently diagnosed, although my parents don't have a lot to do with it now, they're pretty stoic and independentsmile

NewspaperTaxis Wed 22-Jun-16 14:39:58

Parkinson's UK is very good, in particular its free booklets, I got one on advanced Parkinson's and it is excellent.

I mention this on another thread, but really do make sure to get Power of Attorney in Health and Welfare, also on Finance for both your parents but in particular your Dad. Someone else disagrees with this but honestly, it is the one thing that I wish someone had mentioned to us and no one ever did.

All I am doing is sending Subject Access Requests for my mother to the CQC, Social Services and other bodies and they joyfully thumb their nose at you if you don't have PoA in Health and Welfare, it helps them to be less liable for medical negligence, it is a gift to them if you don't have PoA, they don't have to reveal any info to you at all unless it is info regarding 'Lweji' otherwise it is all redacted.

Lweji Wed 22-Jun-16 16:21:39

Thanks.
We are considering getting power of attorney for my mother, but we have to sort some practicalities.

Meanwhile, there have been bad news. His condition. Deteriorated and it seems he has/had parkinsonism rather than Parkinson"s, in part due to low sodium levels. He is now in hospital and several liver metastases have been detected. sad
We still don't know the original source.
Hopefully, a clearer picture regarding prognosis will emerge in the next few days.

mountaintoclimb Wed 22-Jun-16 16:40:12

Contact your local branch of Parkinsons Uk. They support both people with Parkinsons and their families. They have regular local meeting and really are an excellent source of support.

mountaintoclimb Wed 22-Jun-16 16:40:34

Contact your local branch of Parkinsons Uk. They support both people with Parkinsons and their families. They have regular local meeting and really are an excellent source of support.

NewspaperTaxis Thu 23-Jun-16 11:24:39

Not seen your Dad's relative medical notes, but one of you will have to visit three times a day to ensure he gets enough drink otherwise to put it bluntly he won't with you any more, if my experience with my mother two years ago is anything to go by (she is still with us because I did the drink thing). Bring cold peach tea.

By enough drink I mean a litre a day though I assume he is on a drip and NG Tube and if so that helps. But you will need to keep an eye on this, imo.

Lweji Thu 23-Jun-16 13:18:58

Thanks. Yes, I don't trust the hospital to make sure he is sufficiently supported. He has a drip to replenish his sodium levels, but visits are highly restricted. Only my mother can stay there for the afternoon and anyone else is only allowed for one hour in total.
He had some tests yesterday, so hopefully the doctors will tell us more today.

OldBeanbagz Thu 23-Jun-16 13:51:07

So sorry to hear about your dad's diagnosis and the more recent bad news.

My own dad was diagnosed over 8 years ago (at 64 years old) and the first 4/5 years the drugs managed to slow down the progression and he was able to continue with life as normal.

Since then there's been a considerable decline and medication wise he's run out of options. He's currently on the waiting list for a dopamine pump but i'm not sure there's enough funding in his area for it.

He gave up driving two years ago and now walks with either a stick or a wheeled walker. There have been several falls though none have required hospitalisation. Over the last 6 months his voice has been in decline too so he won't talk on the telephone which is a problem as me sister lives some distance away.

Support wise you'll find it's your mum who needs your help as much as your dad. It can be hard living with someone who's frustrated with their condition and who's health means they can't live life to the full. And then there's the sleep disruptions to cope with sad

My own DC are 14 & 11 and are very understanding of his condition. They don't get embarassed when we're out even though he can 'freeze' for several minutes and appears like a very old man even though he's only 72. They can even manage to persuade him to bowl them a few cricket balls sometimes though he's hopeless at fielding!

NewspaperTaxis Thu 23-Jun-16 15:42:46

You might also need a fan for the room if the weather continues to be muggy. One from Robert Dyas might be okay, or a £40 cooler tower from John Lewis is good, according i newspapers Top 10 recently.

Of course, if you dad is out of it, do not do the drink thing, he may need a SALT assessment first. Salt is of course Speech and Language Therapist though really they deal with strength of swallow. So, can he drink, can he only eat puree or fork mashable food.

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