And it’s not for sissies. I’m going to talk about what it’s like sometimes and you might not want to read this.

My wife has been getting weaker for a full year. After she was diagnosed with a brain lesion she had a strong radiation treatment. She was still walking on her own at this time. The radiation oncologist referred her to a medical oncologist to continue treatment. She started losing strength day by day after starting chemo. At first I would help her to the car and drive her to the cancer care center. At the CCC I would get one of their wheel chairs for her because they make you check in and go from one end of the building to the other and back again.

She started having trouble with our stairs and I would have to get behind her and push and lift on her butt to get her up the stairs. On the way down I went in front of her and held her hand. I could see this getting worse so I searched online for a used stairlift. I found one on eBay and bought it only to find out the guy had already sold it. It took me three days to get my money back. I couldn’t wait for that so I went to Craig’s list and found another one. Craig’s list works a little better than eBay and I was able to contact the seller before buying it, in fact I didn’t even pay online but gave him cash when he delivered it. I thought I was all set now until the first day we used the stairlift she still had to walk out to the car and we had a total of three steps between the house and the car. She fell on the third step, I managed to get her back on her feet but realized I would need to build a ramp.

I called my son’s father in law when we got home from the doctor. He came over and made some measurements and a list of materials I needed. I picked them up that evening and gave him a call. He came over in the morning and we built the ramp. That worked pretty well until the end of the year she was having a hard time standing and walking. I moved a commode chair right next to her recliner so all I had to do was help her to her feet and turn her a bit so she could sit on the commode. The last week of the year she was losing strength daily and I was afraid we wouldn’t be able to wait for Monday’s doctor appointment. I ended up calling an ambulance for her on Friday evening to take her to the ER.

Our son and I spent the entire night with her in the ER as they ran test after test. They finally discovered she had a UTI just before they were going to ship her to Pittsburgh where they have brain doctors. They started her on IV antibiotic and admitted her to the hospital. She spent a week on the sixth floor getting the UTI under control and another week on the fifth floor getting physical therapy to try to get her back on her feet. They were unsuccessful at that and sent her back home by ambulance and put her on hospice care. 

We have an RN visit on Mondays and Fridays for about a half hour and an Aide on Tuesday and Thursday for about a half hour. The rest of the time it’s up to me. I’m getting pretty good with getting her on a bedpan and wiping her butt. I have a couple hundred pairs of rubber gloves to make the job easier. I keep my phone with me where ever I go around the house so she can call me when she has to go. Usually she wakes me twice a night when she thinks she has to poop. When you are bedridden you can never trust a fart. Better safe than sorry. Changing the bedding while the patient is still in the bed is not an easy task.

I somewhat enjoy giving her a sponge bath. I keep the house real warm so she doesn’t get chilled and massage her as I wash her. She seems to enjoy her bath. I tell her how much I love her all the time, after everything is washed I put special body lotion on her because her skin is so dry. I bought her a half dozen hospital gowns because they are the most practical thing to wear when she is in the condition she is in.

We are accumulating quite the assortment of medical equipment. She had a walker from when she had her hips replaced. She used that during physical therapy but they suggested a wheelie walker for her trips to the bathroom. We got one but she never used it. I had a shower chair and adult commode chair from when I broke my hip. She wanted a wider chair because she has wider hips. Now we have two of each. We have a hospital bed complete with the mattress that continuously changes air pressure in the different sections to help prevent blood clots and bed sores. We didn’t have any sheets that size so I bought some twin bed sheets to get us started and ordered hospital bed sheets on Amazon.

We had just about weened her off her steroids before she went to the hospital. They put her back on them. They give her a good appetite but I’d like to see her get off them. Who knows what side effects she is getting from them? They are known to cause weakness and that’s her biggest problem right now.

She slept most of the day today, I don’t think I like that. I would like to see her more active. Well I guess I jabbered enough tonite, I just wanted to say what was on my mind. I’ll try to get back to this and give an update later.