I Am Back

When I logged on this afternoon to attempt to write, I was shocked that it had already been 3 months since I have posted. In addition to that, the 3 months before that were pretty sporadic. Somehow, it made me feel extremely tired.

The last 6 months, especially the last 3 have been a challenge. I hope I met that challenge well. I certainly hit it head on. I do believe the last 6 months have aged me about 3 years. I see it every time I look in the mirror.

If you are new to my blogs, I should explain that after my being diagnosed in 2011 with FTD, my husband was diagnosed about 3 years ago with dementia, most likely Alzheimer's. I had promised him that, as long as it was at all possible, I would keep him at home and care for him. Proud to say, I kept that promise. Mike died on November 18, 2019, right here at home. I did allow I friend to help out on a part time basis to help me and relied on my sister to help as well. Since I needed help as well due to FTD, it was the only way I could do it.

I am not going to pretend it was all smooth sailing. It wasn't. 

If you do much reading on the blogs and support groups devoted to FTD, you will think like I did. Hospice and palliative care is out there and you just have to ask for it. It sounded too good to be true and it was. When I was finally feeling that I could not do it without more help, I took him to our doctor.  She kindly made a request for a hospice evaluation. They responded on a timely basis, but he was not accepted into the program.

Medicare controls the hospice regulations and they have become stricter as of late. Their medical director must be able to, without doubt, believe the patient will not live beyond six months. Unfortunately, just as FTD patients can, Alzheimer's patients can also put on the charm when strangers are around. He not only cooperated, he joked and flirted with the hospice personnel. There are a couple private hospice companies in the area and I was told they might accept him, but I had not heard the best things about them. Also, would I really want him to have care from someone who was willing to skirt the rules?

I asked about palliative care. I had been reading so much about that on the FTD support groups. They looked at me as though I had horns. They "explained" to me that palliative care is what the hospice provides, keeping the patient comfortable through to the end. When I explained what I had been told and what I had been reading, it was two separate things and asked where I could get palliative care. They did not know, but did contact our doctor and suggested she request home nursing to come out. They did and provided a physical therapist, an occupational therapist and a home health aide 2-3 times a week.  This did not accomplish much except entertaining him but he did allow the aide to shower him, something he never allowed me to do, only sponge bathes.

After 3 weeks, home nursing called our doctor and suggested a second evaluation by hospice. We were fortunate that the same nurse practitioner came for that visit. She was taken aback by how much he had deteriorated in that time. For instance, his calf measurement was 3 centimeters smaller. They immediately accepted him this time.

They came armed with equipment, an air mattress (I had already obtained a donated hospital bed) to prevent bed sores and for more comfort as well as every supply I could imagine, even his Boost nutritional supplements and adult briefs. BUT, they only could come three times a week and would only be there for less than 2 hours. I also could not leave during that time. 

By this time, I was beyond exhausted. I am not sure what you would label that as, but whatever it is, that was me! My friend who had been helping us out for the past year started spending more time and would alternate night duties because he did not sleep more than an hour at a time. I don't know if I could have kept him at home if I did not have her help.

After just 3 weeks, he was put on daily visits. That was a Godsend, mainly for the health aide coming every day. She would shower or give him a good sponge bath, help me change his bed and help me coax him to eat or drink. After just one week of this, I started sleeping on the floor next to his bed. The hospital bed I had been given came with a mattress and since his bed now had that wonderful air mattress, I put the original one on the floor and that is where I slept, always holding his hand or arm.

He slept a lot better because when he would get restless, I would assure him I was right there. My daughter came home and spent a few days with him during this time but finally returned home because she firmly believed he was hanging on so she would not see him die. The second night she was gone, I became very uncomfortable lying on the floor, got up and went into my room to lie down for a short bit. This is when he chose to leave us.

I so regret leaving the room. After I was out of his room for about 15 minutes, my helper/friend went in to check on him and realized he was dying. She waited until she was sure he was gone, then came and woke me. Even though I know he chose to not give up while I was with me, that haunts me. I cannot understand why she waited, but I have forgiven her. 

I immediately called hospice and they were there within 30 minutes to declare him dead. (It was about  a.m.) That was the last time I saw or heard from anyone from hospice. Something that brought me great peace was that, while we were waiting for the nurse to arrive, I gave him one last sponge bath. His final two days, he was feverish and perspiring heavy. Being able to do that, just the two of us in that room, is now a fond memory.

I am guessing that in more populated areas than this one have more options for palliative/hospice care, but all those things the "experts" claimed could be provided for us just were not available.  Don't get me wrong, I would recommend them to anyone and everyone, they were wonderful. I was just disappointed that everything I had heard about available care just did not exist.

So, it has been two months since his death occurred. Christmas holidays were difficult yet, in other ways, very special for my daughter and me. 

How did I do it? How did I manage to care for him at home? It was not always easy. In fact, some days were downright difficult. How I got through it was by relying on my common sense. I have no medical training but I have a lot of common sense. If he was fussing or trying to get out of bed, I would assess what was going on and come up with ways to keep him comfortable. I wrapped sheets of dense foam around the bed rails so he would stop getting his feet stuck and injuring himself. If he didn't want to eat, I did not force him. I would encourage him and make things like a Boost milkshake that he would most often drink. I constantly encouraged liquids. I sang to him. Now with that, I pity him because since FTD, I cannot carry a tune at all. He was not a practicing Christian, but I would pray with him. That seemed to soothe him. I talked to him nearly all the time. I read to him... chapters of the book he wrote and had published about his brother and growing up in simpler times.

Above all, I kept assuring myself that it was okay if I was not perfect. If I judged incorrectly and did something wrong, I kept telling myself that the worst day at home with me making a mistake or two was better than any day in the nursing home. There was no way this man was going to die alone.

As I said it aged me. When I look in the mirror I am shocked some days. Where did those wrinkles come from anyway? I am sure it shortened the time I have left because I sure didn't take care of myself as well as I should have. But, hey, I have FTD and it's going to kill me. What better way to spend a couple years of it. After 47 years of marriage, I was willing to push myself as far as I could to care for him.

That is our story. That is why I have not had the energy or time to blog for 3 months. I am back though and my New Year's resolution was to get back into writing my blog, helping others with FTD and shouting out to the world about this horrid disease. Thank you for your patience and for all the encouraging email. I love all of you.