You can keep PALS home, but it wont win decor awards

[Tomswife]

We live in a small three bedroom 1927 tudor colonial, that we have lovingly maintained over the 39 years we have lived here. Tom has always loved this old house. We renovated our very scary unfinished basement to put in a playroom for our grandchildren. That was the last home project Tom accomplished before his diagnosis of ALS in August 2022.

Tom and I agreed his ALS journey would be at home.
Tom's hospital bed is in a small den downstairs close to the bathroom. A recliner, folding chair, TV and many pillows are in the room. He stopped going upstairs 6 months ago.

I cared for Tom by myself until January 2023. I started using an agency for home health aides in January. At first 3 days a week. Now seven days about 15 to 18 hours per day. I always have someone overnight.

The living room holds the hoyer lift and sling and I roll the lift into the den when needed and then roll it back out. Small shelves store all of the medical, toiletting supplies and bath towels. Etc. Both wheelchairs are also in the living room. Pwc and manual. The dining room holds his clothing in bins. The RX are all in the kitchen in a container. All rugs were removed and stored. Furniture was stored to make room for the lift and 2 wheelchairs.

We don't use the larger family room in the back for Tom's care. That is where the dog and cat hang out and wont bother the caregivers (doors closed). I have found that most aides dont want to be near our dog or cat.

We have a 27 foot ramp zig zagging on our front lawn up to the front door.

Tom will transition over to home Hospice in a week or so. We are very thankful we have our home and Tom can enjoy being cared for here.

You can keep PALS home with many changes. Its all about our PALS.

 

[Mary2]

No decor awards here! I have the boxes of Kate Farms in the living room! We have Pal's desk with the eye gaze in the dining room, the medications are in the kitchen and everything else including Pal's bed is in the family room.
But it all works! The sun comes into the dining room where PALS is most of the time and it very nice. In the family room we are watching MidSomer Murders on Prime. This was a long running British murder mystery series. It is pretty good!

 

[Tomswife]

I have heard that midsomer murders is good. Tom loves a good MM.

 

[MJT]

Clutter makes me nervous, but luckily I have a friend that is also a minimalist who I can joke with about my equipment-filled space. You are right; it's all about our PALS! Kathy, do you ever leave when aides are there? Right now, I only need an aide so I can leave the house. Mary, you leave PALS with an aide for a few hours. Is that right? Laurie said she and her son didn't.

 

[Tomswife]

Will run errand. I have never left more than 30 mins. It also depends on the aide. My m, w, f morning aide is very experienced. So i save my trips for those days.
I always ask Tom if he needs to BM. If yes. We do that first. The aides will not work hoyer lift without me. I am in charge of lift and sling and they help.

 

[Mary2]

Yes, I do go out. For me it would be very impractical to have gone 3 years without going out at all. 2 years with the hoyer lyft and about 7 months I believe with the sliding board....maybe longer. Going out is always a worry.

 

[MJT]

Thank you. I am so lucky to have kids helping. Adding aides is overwhelming to me.

 

[Mary2]

Yes, MJT you might be able to go quite aways with the kids helping. My son is hands on when he is here, but that just isn't that often. I am really dependent on the 2 caregivers. Especially this one man who use to work in a nursing home and is comfortable with the hoyer lyft.

 

[Mary2]

I will say if this wasn't my son's first year of marriage, I might be on him to come more for the week ends. But we really don't want to interfere with the first year of marriage.

 

[Doing My Best]

I go out regularly to work out or go for a walk with a friend, see my 92-year-old mother, or do errands. I am lucky because our 26-year-old son lives with us, and I can often rely on him. We also have a caregiver 4-6 hours a day, 6 days a week. We've had the same main one for 18 months, and both Steve and I are very comfortable with her so I don't hesitate to leave if she's here.

Honestly I think I would have gone off the deep end after three years of this if I hadn't had that kind of help and the ability to get away. My RN daughter has spent a lot of time convincing me not to feel guilty about taking breaks because burnout is real, and if the caregiver falls apart the whole scene falls apart. We need to take care of ourselves, our health and spirits, keep our energy up - the critical things for me are exercise and seeing friends, even if just for a ½ hour walk. As my PALS' condition gets more advanced I see how much harder it becomes to be away, but our main caregiver has learned along with me, and so far can do pretty much everything I can.

I feel like every CALS deserves to have some breathing room without feeling guilty, and it's wise to prioritize self-care to the extent possible. I know I stay more patient and positive by taking breaks (and I'm also on an anti-depressant, essential to the CALS toolkit if you ask me).

Just sending love and strength to all of you, it's an enormous burden to carry and I hope you all find ways to take care of yourselves in addition to your PALS.

 

[lgelb]

Sean and I had a somewhat different situation than many of you. There were two of us living in the same place for most of the ALS years, so we could trade off leaving the apartment. So I wouldn't use our experience as a reason to go out or not...just would suggest having basic safety protocols in place as you would do as a parent or senior caregiver.

 

[affected]

Our house won no decor awards either, and one spare bedroom packed to the ceiling with furniture that had to be removed for equipment!
Chris couldn't get to our bedroom or my office once he could no longer walk at all. They were a little bit of a haven for me.

It's amazing how you can make do with what you have, and it can be important to stay at home. For us that was important.
I love that here we can all show how we did things differently due to circumstances and personal needs. None are right or wrong for all, but we each find our right, and can help others figure their right.