Grandma diagnosed, any good support ideas?


#1

My beautiful, wonderful, 6 foot tall, 84 year old battle-axe of a Grandma has recently been diagnosed with Parkinson's. She is the pillar of the family and can see her independence slipping away. It has been emotional for all of us, on the occasions I've been able to visit (I live abroad so visits aren't easy) I've had to hide in the spare room and cry my heart out in secret. 

She is dealing with it well every now and then, but recently depression has set in and in our regular telephone calls it's as if she just isn't there anymore. Up to this point we've been able to deal with it in humour - we call her Shakin' Stevens and clink our glasses together if her shakes get bad while eating/drinking. 

She is becoming extremely paranoid in public, convinced everyone is watching her spilling her tea - it doesn't matter how much we tell her noon else cares as they are too lost in their own thoughts. 

Please can you share with me how you support your family members who are also suffering from this frustrating disease? I want to make sure my Grandma knows how much she is loved, but I don't want to patronise her or make her feel like I'm trying to take over and relinquishing her control. We thought maybe about her attending some Parkinson's support groups, but did think that she'd see this as a bad thing, particularly if she saw someone worse off than herself. She would wish them better but then be living in fear of the same thing happening. 

She is a family inspiration and worshiped by us all. I don't want to go in all gung ho. I want to get it just right. any help/advice/kind words would be very appreciated!

 


#2

Hello FelicityJersey
Your grandma sounds great. You sound great. This is a good starting point, because I always say I don’t have Parkinson’s - the family has it.

Although your grandma can give me 20 years, I think I can see where she’s coming from: it’s all right to feel paranoid even if they aren’t out to get you. Yes to telling her she’s loved - can’t get enough of that - no to taking over from her: as long as she’s safe the more she can do herself the better.

But woah on the depression. I always say (well, far too much, actually) that it’s a mix of the PwP, plus the PD, plus the meds. And these need balancing for the best effect. So the depression could be the drugs, or it could be the PD. Has your gran got a Parkinson’s nurse? Worth their weight. Or (get her to) try the PUK helpline, top of every page. Or GP. Or neuro. And tell her again how wonderful she is. Can’t get enough of that.

Hope things improve,
Very best wishes

Semele


#3

1) . I might be worth noting  that there is depression but also there is the  apathy  that results from  lack of dopamine in the system.i.e.. the right level of meds. should hopefully deal with  apathy..   In the run up to my dx. which mercifully was not unduly long I could sit for hours. inert and uninterested in anything much.  

2)  On the other hand, an apparently overnight change for he worse from "Isn't she wonderful for her age?" is enough to depress anyone. 

4 )However, do not worry yourself too much  a strong character like your grandma is more than likely to cope in the long run.. The best thing my two sons said to me when  I sat them down to tell the glad tidings was,    "Mum, you'll still be the same person".   

3 )  Although, I was 69 on dx.it certainly brought me and indeed my friends up short at first as I have gone from being  the  fittest of my most of my mostly  younger friends to a  74 year old lady with PD, PMR, B12 deficiency osteopenia - watch this space !! and I still look well on it and most people would not know I have PD unless I told them

If you read the above in number order it makes more sense.  |I haven't mastered how cut and paste works on this site

Best wishes

I.  

   


#4

Thank you so much both of you for replying and giving great suggestions, it very much appreciated. Last night I did the #piesforparkinson challenge and have emailed the video to her - I know she'll love it. All the family are doing it this weekend, nominating each other, and my friends have jumped onboard too which is great. If you feel like a chuckle, here was my effort!! https://twitter.com/FelicityJERSEY/status/507792684115718144

Thank you. 


#5

I remember my father saying to me when my OH was diagnosed aged 47 that he wished that he had Parkinsons instead. My father was 70 at the time and, working for Crossroads and he knew what such a diagnosis meant for the future. I wish my OH had only been diagnosed in his 80's. Life would have been very different over the last 16 years, we would not have had to give up work for a start, OH first and then me a few years later, though I don't underestimate your problems; it's devastating at any age.