I am a firm believer that the elderly NEED an advocate. Too many times I have seen hospitalizations go wrong. I’m not talking “kill the patient” wrong, but hospital staff are so shorthanded and busy they don’t have time to sit with a patient that has dementia, for example. What that translates into is this – no one is there to inform the doctor of important details. No one is there to ask questions and complain if complaining needs to happen. No one is there to pass on to the family what is happening and what plans need to be made for the patient’s immediate future.
If the patient is experiencing pain, how will the nursing staff know? Even if they need to use the bathroom or have had an accident – if they don’t understand how to use the call button how long will they have to lie there before help comes? Who will make sure they’ve had medicine that’s required and order food that they will actually eat?
My father-in-law had trouble with UTIs which cause confusion similar to dementia. When these would happen he wouldn’t leave his clothes or blankets on and could give quite a peep show in the hospital to anyone that walked by at the wrong time. Talk about needing an advocate!
Numerous times someone stayed with him at the hospital through the night because he would have vivid hallucinations and need reassurance that everything was really ok. He would try to get out of bed when he was too weak to walk. It was vital that someone be there with him.
My dad had a massive stroke at 88. It was bad enough that home care was not an option. My siblings and I all lived fairly close to the nursing home we had to put him in. We were his advocates. He was always very strong-willed and could be a bit opinionated especially as he got older but once he had the stroke, that changed and for the most part he was not able to advocate for himself. He couldn’t walk and as time passed, even talking was a struggle.
We are a very close family: Sunday dinners, holidays and birthdays together – the whole deal. So when dad had to go to the nursing home, we decided that being there frequently to visit him and check on him was our best and only option.
We’ve all heard nightmare stories about nursing home care or rather, the lack thereof. We wanted to make sure that our dad didn’t struggle with that. So we coordinated as best we could with our working schedules to pop in and out of the nursing home as much as we could. Partly so he knew we hadn’t forgotten him but also to make sure he was being cared for and not ignored.
My sister-in-law drove a school bus route so she would pop in midmornings on school days. The staff quickly learned that she was going to quiz them: what’s his blood sugar this morning? Did he eat all his breakfast? How did he sleep? It quickly became routine that they would have the report ready to go and she would then relay it to the rest of us via group text. It was comforting to get that report and know how his day was going.
Several times a week, my brother-in-law who had just retired, would go in and visit during dad’s lunch hour. As his stay at the nursing home progressed, he needed help feeding himself. So bless his heart, my BIL stepped up and did what needed to be done. Again, the staff knew someone would usually be around, so it wasn’t too often we found him in wet pants or being ignored.
Then after work my sisters and I would take turns going by to help with dinner and taking him for “strolls” in the wheelchair. Another update on blood sugar numbers and the day’s events would be requested of the nurses or aides. A final report to the siblings and inlaws as we headed out for the evening. Sometimes the others and even the grandkids jumped in to assist.
We kept a plastic airtight tub with some snacks in it for dad and for us, too. Haha. Peanut butter crackers, shelf stable pudding, granola bars, applesauce, plastic spoons, napkins, etc. Other items we would keep there were puzzle books such as word search, sudoku, coloring books and crayons, etc. These were for his visitors and were good to have on long days or for great grandkids who get bored easily.
When he had to go to the doctors for various things, one or two of us would take him. It was an ordeal but as long as we were able, we wanted to be there for him. He had always been there for us. This way we weren’t relying on the nursing home staff to relay details about the current issue to the doctor and hoping they would pass on doctor comments to us.
Having his medical history, list of medications, insurance info, etc. in a binder was very helpful, especially since we took turns going with him. Also, documenting questions we want to be sure to ask, or behaviors that seemed strange could be tracked in a journal/binder similar to this.
Don’t get me wrong there were some great nurses and aides at the nursing home and there were some that weren’t so great. Again, the ratio of staff to patients makes it very difficult for patients to get the care they really need, especially at a nursing home where patients are typically in more advanced stages of decline.
Being there ourselves not only helped the staff but allowed us to see firsthand how he was doing. He would almost always reward us with a big smile when he saw us come in. If it was nice we would take him outside to sit in the sun or depending on his stage of mobility, sometimes we would go for a drive.
Somedays, that was trimming his hair which anyone can do with a set of trimmers like this. I also kept a cape like they use at the hair salon in his room. This kept me from getting hair all over him.
It didn’t seem like he could verbalize that he was in pain, but you could tell because of his agitation and his wincing face that he was, indeed, hurting. Nursing staff isn’t able to just give pain meds if the patient doesn’t say they need them. If we were there we could tell he was struggling and request some meds.
We were involved in his care. We resolved that we wouldn’t be visitors or spectators but that we would advocate for him since he wasn’t able to do it for himself. And we continued to do so for three long years- longer for him than for us, I’m sure. We cared for him day after day and were able to be there at the end. After his fight was over, we all were comforted in knowing that we had helped and wouldn’t have it any other way.
Until COVID-19 became a thing, we would all go back each Christmas and take goodies for the staff and sing Christmas carols to the patients. Now most of the faces have changed and they don’t remember us or our dad. All those years of visiting with the other patients and walking those halls passing the time waiting for mealtime or bedtime or whatever time, it was time well spent on a man who was very loved.