Step mum has asked if DF with Parkinson's can stay with me

[BlueRaspberry7]

My dad and his wife moved a couple of hours away from where I and rest of his family live, to have the lifestyle and big house that they wanted.

Dad has since developed Parkinson's which is now declining and he has started having regular falls. Step mum feels he can't be left alone any more.

She has asked if he can come and stay with me "for a few days every now and then" as she wants a few days off.

My situation is I work full time and have two children and we're live in a 3-bed house. She's asked whether my children can bunk up when he stays. I'm already feeling stretched with demanding work and family life as is.

I now feel very guilty and ashamed for not wanting to regularly welcome DF in our home, but I know it won't with around my family.

I've asked if they can get some assistance at home, but he apparently isn't ready for this.

Please can anyone help me with experiences, thoughts... I'm feeling so confused and guilty.

I think this is really important. unanimously carers ARE always happy once the care has been put in place. it's just the process/acceptance that is hard

We always said “try it, if it doesn’t work, you can cancel” and she never cancelled anything! It gave her an out, though

Great advice thank you.

Lots of people on here have said better to get care a year too early than a day too late.

The tricky thing I find is my SM will get in touch on the very bad days or when he's had a fall. I understand that because she's worried and reaching out for help. I think in between those times he's generally faring ok, perhaps not living his fullest life and struggling with many of his daily tasks, but more or less coping. So then when i raise the idea of some form of intervention, it's met with a bit of a shrug.

I'm not sure what you might think of this idea OP:

Is there a suitable care home that provides short term respite near where you live? He could go there for a week's respite and you and the kids could visit frequently while Stepmum was in London?

If the home was good, and they can afford it, it could make it a regular thing. This all costs money of course. And then there is the transport but perhaps this would work?

I haven’t read all of the thread but have skim read your posts, OP. I would encourage your SM and DF to have a conversation with your DF’s specialist nurse. S/he will be able to advise and signpost to appropriate services and will be able to answer questions that may be able to give your dad some reassurance around ‘not being ready’ for carers. He may be anxious that carers signal ‘the beginning of the end’, so being able to discuss his concerns might help him work things through.

@AndrexPuppy yes this seemed a really good starting point to me. I suggested to SM and she said their Parkinson's nurse isn't very good. She also just said hmmmm to my suggestion of an OT visiting DF to see how daily tasks could be made easier. When I visit there at weekends i see him struggling with cutlery, using his laptop and mobile, being wary of the bottom step the stairs and so on.

SM generally seems keener to let me know how bad things are then she is receptive to hearing any crowdsourced suggestions or ideas. Which I understand if she's just calling for a bit of a vent updates, but it also gets quite frustrating.

Can your father get up after he had had a fall? It would not be good for SM to lift him. She needs to call for an ambulance. They have a thing that lifts people. They may however take him in for a check up.

@Flossflower I asked if he needed checking over at the hospital or dr after his fall, as he tells me he can't bend his back at all. He tripped over a hoover onto a slate floor while carrying the shopping in. They both told me a check up wasn't necessary.

But how would you do it? Where would he sleep? A single bed in a child's room that he is unfamiliar with? How would you stop night wanderings? How would you get him up and down stairs? How would you get your children to school whilst also watching him so he doesn't fall? How would you help him in a potentially small bathroom...would you and he be happy doing the personal care? How would you get him up and downstairs to the loo multiple times a day? How would you manage your children whilst doing his care? How would you manage the emotional confusion caused by a change of location. I would always, always help family but I simply wouldn't wheel a seriously ill man into an unsuitable environment.

Is SM ensuring that DF is taking his medications bang on the right time, every dose? Parkinson’s medications are very sensitive and it is really, really important to symptom control that they are taken exactly as prescribed, right to the minute. It sounds fussy and faffy but it makes all the difference. Hopefully his team have made that abundantly clear to SM & DF at their appointments but it’s worth checking.

It's a good point, and one that isn't solved by having carers coming in, as they can usually only give an estimated time (sometimes a two-hours slot) of when they'll get there.

By the sound of things, though, your SM is still capable of keeping on top of that.

Medication by transdermal patch is an option for later.

@AndrexPuppy thanks - I believe they have alarms set up for these but I've heard DF mention forgetting to take them on time.

They tell me that he's transitioning to a patch for his medication now.

Cross posted with you @Lancelottie , that must be the transdermal patch he's starting on now.

I'd suggest carers going in 3 times a day and monthly respite in a care home to give Step Mum a break

You can go over 2 or 3 times a month for a day each time, to allow her some free time too

We had good and bad experiences with the Parkinsons nurse, we did ask to change nurses in the end and got someone who was far better so that might be possible? The nurse Dad was first assigned would call and moan about all her own problems and did absolutely nothing to help, couldn’t sign post to anything etc . We asked the consultant if we could be allocated someone else and he agreed straight away. The second nurse was brilliant.

How you deal with your stepmum calling to vent and asking for help but being resistant to outside help depends how blunt you want to be and what your relationship is like.

Ultimately you can’t force them to accept care but you can be really clear about what you can and can’t do so they’re not factoring an impossible level of help from you into their plans. I would keep saying “I will come and stay and help to give you a break when I can but I really think you need to start looking at outside help now Dad can’t really be left alone” You need a network of support and that should include some professionals at this point, even more so if family aren’t local. Could you offer to help look? My Dad was a lot more accepting of help when he met people.

All easy to say I know. I’ve been there, it’s really really tough.

OP lives 2 hours away and has two kids - 2-3 days a month is too big an ask.

@BlueRaspberry7 you might want to join The Cockroach Cafe threads too, for general support from those in similar boats.

Lovely thanks @SheilaFentiman

It is a long drive, you're right.

yep, that is very familiar! it's very difficult, you have my sympathy

It is. A 2 hour drive, a day of physical caring and a 2 hour drive home, to do it all again the next weekend? No.

Please don't do this! I've been the kid in this kind of set up and it's awful. Putting your family first can equally mean helping them find suitable respite/carers, not doing it yourself!

Was it their decision or the paramedics decision that he didn’t need to be looked at. When my Aunt fell, I found her on the floor. I couldn’t lift her safely (She had been on the floor overnight). I dialled 999 for an ambulance. They wanted to take her in but she didn’t want to go. I told the paramedics I couldn’t look after her so she didn’t have much choice. It was good really because then they wouldn’t let her out of hospital without a care package.

Skipped to end.
My dad died rapidly after being put in home. (Alzheimers), He stopped eating, it took 5 weeks. My handicapped mother wasn't able to look after him. I wasn't in the same country & had young DC, I still miss him & just wish I had done things differently.
Now it's my turn, my H had a stroke & his health plummeted, he has spent 6 weeks home in the last 9 months. My DC can come & look after him at home, so far only happened once for 3 days. but my God, the relief gave me the oxygen to carry on. We do a rota for hospital visits which lightens the load. When he was home it required constant surveillance & meant I had little or no sleep (his internal clock is broken, & he does a groundhog cycle every hour or so all night.) it nearly killed me.
What I need, & I imagine your MIL needs is "time off", in her own home, where she can sleep & rest.
Whatever you decide, please don't feel guilty, they moved away, they wanted the big house, she may have to downsize for a "bungalow", or use some of their money on carers, or respite centres.
There comes a point when the partenr/carer will be broken, so ultimately, your father has little choice to accept the decisions his wife makes

@cooldarkroom so sorry to hear of the difficult time you've been having.

The sleepless nights sound debilitating, then with the full day of care to get through afterwards.

Sending warm wishes to you and your family