Hospice was amazing. They came out at least once a week to check in with us and MIL. We had a CNA who came twice a week to bathe MIL for us. We had a social worker who talked to us and acted as a marriage counselor a few times..I don’t know what we would have done without Carrie.
Of course just because we had HOV, doesn’t mean that life wasn’t extremely stressful. I am the one who stayed home, therefore I took on most of the care of MIL on a daily basis while Sean worked. I was overwhelmed daily with the difficulty of caring for my 4 year old daughter, my MIL who was dying of brain cancer and my GMA who we were told had dementia and I will eventually get to her part in the story. Life was really not fun…There were really not enough hours in the day to get everything I wanted or needed done. I tried to come up with a routine and schedule so that everyone in the house knew what was happening and when. Both MIL and GMA were still able to participate in household chores and things so they each had a list of things they did so I didn't have to worry about those things and both of them still felt useful. I would set up times for all of us to go to the park so that my daughter was still allowed to be a child and it was good for the GMA's as I started calling them to get out of the house. It was hell on me. Have you ever tried to keep track of 2 senior citizens and a 4 year old at a park or the grocery store or the mall? Yeah, my advice is to NOT TRY IT! lol. Unless you have help it is not a good idea. I would get everyone rounded up and try to keep my eyes on all of them and inevitably one of them would sneak off in one direction and then another in the other direction. Not only that, but one of the GMA's was the stage in her disease where she thought taking her clothes off at any time and in any place was a good idea. We started calling her the Naked Bandit. It's a running joke now and if I am honest it was kinda funny at the time, but still hard to deal with. I couldn't have playdates at my house because the GMA's were not appropriate most of the time.
I remember one time I had one friend and her two boys over and MIL had been doing fine and was visiting with us. She got up and went to her room and a few minutes later came walking out of her room stark naked. I had to run over to her and get her back in her room and dressed again. Thankfully the friend that was here was very understanding and she laughed it off. One of the harder things to deal with was when MIL would tell me she didn't have a son. I would show her pictures of the family and tell her who everyone was in the picture and she would say to me, 'no you must be mistaken, I never had a son'. I knew better than to argue with her, you have to meet dementia/Alzheimer's patients in their reality, not yours. She would look at pictures from my wedding to her son and point at me and say who is this, she looks familiar but I don't think I know her. Then trying to explain this to my 4 year old daughter..that was hard. I had tons of mommy guilt over the course of time that we had MIL and GMA with us. I still feel it, I still feel like I didn't do enough to shield and protect her from what was happening and that it's damaged her in some way. Yet on the other hand I know that because we included her in the entire process including meetings with the Hospice team and all of the discussions about what was happening that it made it easier for her to deal with and accept that this just is a natural part of life.