Help to Go Out Occasionally

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Hi There,

I recently started following this brilliant resource.

I’m wondering if anyone has any suggestions on my situation, which I realise is nowhere near as sad as many peoples’ here.

My wife and I are in our 50s, she has Parkinson’s Disease which is not at all well managed by medication, and bad anxiety.

She is petrified of being left on her own in the house in case something happens to her. But this means I can’t go out of the house myself. I do work full time at home.

If I try to go out she panics and makes me feel really bad. I’m not expecting to go out for hours, just an hour or so sometimes. We don’t really have any local family of friends who could step in like this.

Would one of the caring agencies be any good for a couple of hours ? She really doesn’t want to try this, but we may have to. It would seem a bit odd for them though as she doesn’t want them to actually do anything with her apart from just being in the house. Also it’s not easy for us to have a set time each week as I may not be free with work at the time when they’re booked which would then be a complete waste.

Thanks very much

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hi @jdta09 , welcome to the fourm. I would try one of the care agencies but also speak to the gp, maybe they can give her something but also put you in touch with people to help.
hope something can be worked out.

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Talk to Social Services, there may be a local “Sitting Service”.

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@jdta09 Welcome to the Forum.

Are you in touch with a local Carers Support Centre? Check with your local Council if you aren’t sure where they are - many either help with Volunteer Sitters or can put you in touch with a Service Provider. I was on the waiting list for one but we are right out in the sticks so there was a distinct lack of volunteers in our area!!! They usually try to arrange for the same person to visit for an hour or two one a week or fortnight, so they build up a rapport with the person they are ‘sitting’. Once your wife is comfortable you will be able to get out without worrying and do things YOU want to do, knowing she is safe.

Some Care Agencies can do similar - for a fee - but you’d need to ensure it would be the same person so she feels comfortable and safe in their company.

Hope these thoughts help.

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Hi @jdta09
Welcome to the forum!

My Dad had vascular dementia and outright said he didn’t want to have someone else come into the house to ‘look after’ or ‘watch’ him. A few things we did:

  • We said we were getting someone in to do ‘cleaning’ or house chores. There were a couple of agencies I researched and asked them to do light chores, and make Dad tea and check on him
  • we gently but firmly explained to Dad that Mum needed time to herself - we laid on thick that Mum needed to go out
  • A mix of the 2 above, we said to Dad that Mum needed help in the house, a cleaner and to give her peace of mind that he would be ok, she’d only go out when the cleaner was here…

I wonder if there’s a local Parkinson’s support group in your area, perhaps another idea is that your wife could meet other people and for that hour you could do something? If not in person, via ZOOM? So she’s engaged with others while you have an hour to yourself. Perhaps this could give her more confidence, and support sharing with others?

Are you aware that some people with Parkinsons can have issues with thinking memory and perception? Parkinson's disease dementia | Alzheimer's Society
If she has bad anxiety and you said the Parksinson’s isn’t well managed - perhaps it could be worthwhile talking to an Admiral nurse: What is an Admiral Nurse and how can they help? - Dementia UK
as well as your GP of course.

Dad was always agitated by anyone coming into the house, for many reasons

  • having to be ‘on’ (he was a proud man and always used more energy to appear ‘normal’), so as soon as the door closed he collapsed with fatigue, sometimes literally
  • he was embarassed about having to keep going to the loo or generally being seen as ill
  • he preferred to hide behind closed doors.

I hope that offers some alternative / lateral thinking solutions and food for thought. Please feel free to ignore any or all of this!
Best wishes

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Thanks so much for these replies

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Hi @jdta09 I can endorse what @Victoria_1806 says about the Parkinson’s association. They also organise lots of face to face sessions. Some arrange transport too. If your wife attended some of these groups it would get her out of the house, help with her anxiety and give you a chance to get out and about too.

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