Tomswife
Senior member
- Joined
- Aug 22, 2022
- Messages
- 689
- Reason
- Lost a loved one
- Diagnosis
- 08/2022
- Country
- US
- State
- NJ
- City
- Livingston
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.
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.