Advice on PPMS and depression/confusion

Caring for someone with MS
1

Hello,

My dad has Primary Progressive MS and until recently was doing OK. He has lost mobility in his legs and is starting to lose grip with his hands. He has a good care team in place who visit 4 times a day.

Lately, he seems to be getting very anxious and depressed about his condition. He thinks he is “pathetic” because he needs care and keeps trying to do things for himself and recently burned himself trying to make a cup of tea. I’m worried that he is going to have to go into residential care. Any changes to his usual surroundings or routine really upset him and moving into care would probably break him.

I live 200 miles away and am an only child. My mum passed 6 years ago.

He is also getting confused and agitated. When I check my phone at work I often had upwards of 5 missed calls that he has no memory of making. It’s currently 5 am and I’m awake because he just phoned to tell me his carers hadn’t been for 24 hours and he was stuck in bed, which isn’t true - I had spoken to him earlier last night before he went to sleep and he was in good spririts and told me he had had a good laugh with the carers who had just been in.

Dad has always been an anxious person, even before his MS diagnosis. I’ve often thought he should seek treatment for depression. I’ve tried to talk to him about it but he is of the generation that doesn’t believe in depression and has said that he would feel silly taking part in a talking therapy and doesn’t want to take more pills. I don’t know what to do, should I contact his GP on his behalf? He used to have a really nice MS nurse, but she moved away, and he hasn’t seen her replacement in over a year. She does have a large rural area to cover, but it feels a bit like he’s been forgotten about.

This is starting to take it’s toll on me. I’m constantly checking my phone to make sure he hasn’t been trying to get hold of me and feel horribly guilty for not dropping everything to move back home and care for him. My work and social life are taking a hit. I don’t know if this forum is the appropriate place to post this or not, I’m sure there are many many people who have heavier burdens than me, but it’s 5am and I’m feeling sorry for myself and it seemed the most appropriate place.

Does anyone have any advice?

Thanks

2

I forgot to mention that while I live 200 miles away, I visit every 3 or 4 weeks and he always cheers up when I’m there and gets depressed when I leave, which makes me feel terrible.

3

Hi Scoobie, I would ring his g.p with your concerns asap there could be something else going on needing attention sooner rather than later, also call the MS nurse to request a visit for him.Besides benefiting your Dad it can only serve to make you feel better that your doing what you can from such a long distance. Also maybe an idea if not already done so contact the care team supervisor for an update on Dads condition from the caregivers and if the current care plan is meeting his needs, keep tabs on any changes with carers. Does Dad have any friends or other family members who live local & visit him that you could stay in touch with. Does he have access to 24hr care line by means of a pendant? I know these are all practical things, but maybe would put your mind at rest allowing you not to be so drained.

Pauline x

1 Like
4

P.s from personal experience the guilt and sadness you feel going on with your life never stops, but can ease knowing he is in good hands.

5

P.s from personal experience the guilt and sadness you feel going on with your life never stops, but can ease knowing he is in good hands.

6

Hi Scoobie…Like your dad my husband has PPMS diagnosed 2003. Of late he can no longer walk and his hands also tremor. I have noticed at times his memory is not good and sometimes he says things that make me a little concerned. I contacted our OT and MS Nurse about it and the MS nurse said she will make sure he has a psychological assessment and then a referral to a counsellor. Maybe your father needs the same. Hold tight and stay strong. It can be very hard on us watching a loved one change before our eyes.

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Hello, my parterner cognitive behaviour has rapidly deteriated in the last two days and by the evening she is unable to walk or stand.I understand the dizziness and weakness is part of the ms but is it also common for people’s thought and speech to to change so much in only 48 hours.