What things have you changed or modified in life to get through it all more simply or easily?

[Kayelless]

I’ve stopped fighting difficult things to help get through all this as the patient (F65 living alone). I find workarounds or sometimes find a completely different method to tackle problems.

I now use washable pee pads at night with an adult diaper so I don’t wake up to go. It’s not something everyone would do and it means a 20 minute cleanup every morning but I sleep through the night now and that’s more important to me. I also use cranberry supplements to fight off UTIs. I use vinegar in the laundry to remove odors.

I prefer to use a rollator around the house but often my muscles get so tight — I’m allergic to muscle relaxants — I’ve given myself permission to not feel bad using the wheelchair when I need it. That was a hard one to overcome. I had to admit that it’s how it is and it’ll get worse… and to move on.

I eat all the good chocolate I want. It’s my favorite pleasurable thing left to do.

What have you done? I know I can learn a lot from those who are further down the road than me.

[Wigwambob]

Kayeless,I am only a carer and fairly new to it but I wanted to say that you sound an amazing person coping on your own and to send you big hugs. Keep on eating the chocolate....

[Kayelless in reply to Wigwambob]

No way I’m going to stop!

[Kasenda]

Hi Kayelless, thank you for being so honest about your situation. I found too, that fighting it only caused more frustrations as I was caring for my husband with PSP. So in the end we tried to cope with things as they surfaced. Things do changed, and after 10 years, he is so peaceful now( so am I ) that all the struggles are forgotten. He sleeps most of the time and we have carers 4 times a day. Whilst we could, we went out daily and enjoyed gardens and lots of garden centres for cups of tea. It was good for us to get out and see life on the outside of our home. So please make the most of what you are able to do and accept things that you can’t change. I wish you all the very best in your journey.

[Heady]

Well done you. My only advise is keep doing what you are, concentrating on the things you can do, not what you can’t.Sending big hug and much love

Lots of love

Anne

[AJK2001]

I admire you for your sensible approach. I was carer for my Mum and she hated admitting she couldn't do things. Getting her to use a wheelchair when we went out was a big step but meant we could actually do more, getting carers in to help her was also a big step - we started with help showering a couple of times a week and increased it as needed upto 4 visits a day. But the biggest thing Mum did was sell the family home of 60 years and move North to be close to my husband & I (we were both still working at the time). She moved into sheltered housing where there was someone on site 24/7. This was such a good move to make, there was an alarm system in the flat, so if she needed someone she pressed the buzzer and up they came, this was particularly valuable when she was no longer able to talk as a standard alarm system relies on you being able to talk to the person at the other end. Because she took these steps, she was able to stay at home until the very end, when she died very peacefully being looked after by carers she knew & liked and my husband & I.Her treat was jelly and ice cream (I know some people say this isn't a good idea with dysphagia, but it didn't cause Mum a problem) - we used to tease her, she was such a party girl having jelly & ice cream everyday.

[Kayelless in reply to AJK2001]

I’m glad you have those good memories — that’s what I’m working on. For those around me as much as myself.

[Nodbod]

Oh my word, you're amazing. If I can advise anything from my experiences, please keep treating yourself, accept care when you start to need it and not when it's desperate or too late. It sounds like you're doing an amazing job, you keep enjoying yourself. xx