Updated: Sep 9, 2021
My mom and I had always had a close relationship, sometimes to the point of knowing when it was time to call each other for various reasons. It was a timing thing and probably a Mom thing, which means to me it was like when your child wakes up and you just know it, not because you heard them, but because your world was stirring to wake you, in case they might need you.
I always felt a little guilty that I didn't go see her as often as she would have liked, but she raised me to work hard and take care of my responsibilities first. I told her that a lot...that she raised me the way I am so it's her fault if I didn't toe the line just for her. We laughed about it, but then came her knee surgery which she sailed through with flying colors except for her anesthesia recovery. Her physical therapy went great, but her anesthesia kept lingering on with several issues. It wasn't major but just little things that the medical community kept referring to as...you know, people get older and just don't get over it as fast.
We gradually got used to Mom's mental status as a little different, but you know, she was getting older and stuff like that happens. Then, the back surgery came along a year or so later. The surgery went well, but the anesthesia, again, created some after affects that lasted and lasted and did not correct. We went with the medical community's theory that the anesthesia just does this in older people sometimes and that it should wear off eventually, but not always...you know, it's because she's older.
At this time, we are looking for specialists, since the doctors could not really explain it. If they had ever dropped the guessing and actually began looking at her actual symptoms instead of staving off a potential malpractice suit, we may have found out something sooner. Ending up in the Emergency Room several times, one of the ER doctors said, "Oh, it's probably the Coronavirus. You know I had basically that same symptoms. You should get her tested."
Really? Then why was she not tested then and there in the ER?
So I asked her, "So you had hallucinations, anxiety, speech impediments, reduced appetite, delusions, memory loss, confusion and trouble walking? If you had taken the opportunity to speak with me, her daughter who is one of her caregivers, you would have known that she does not have, nor has she had any symptoms of COVID. If y'all need money that bad, maybe you should have a fund raiser." I was not happy and she knew to back away at that time. So we went home...again with no help from the medical community.
After that and into the second month after surgery, we took her to a geriatrician who did not come highly recommended, but was indeed a specialist locally, but didn't tell us anything, either. Another geriatrician out of town was contacted, gave her a bunch of questions to answer and probably was useful to someone, somewhere, but we never got any response about them. I was ready to explode, when I happened to think about my neurologist that I had used for several issues over the years. He is a well-known diagnostician, as well. I made an appointment, took her, and within five minutes of talking to us and his staff performing a test for neuropathy, wrote something on a piece of paper, folded it, and handed it to me and told me to look it up online.
He had written Lewy Body Dementia. This is a horrible type of dementia that changes day to day, hour by hour, minute by minute, causing the above symptoms plus Sundowner Syndrome, and has several stages. We were already seeing Stage 5, then shortly Stage 6 out of 7. She had already lost much of her appetite and was not thirsty either. She had gone from using a walker, falling several times (unharmed), then used a wheel chair. Dementia is the brain dying and eventually will cause the patient to die as they lose control of their life-giving organs.
We took turns taking care of her at home for just over 3 months, driving back and forth up to 3 hours one way for one of us, giving up jobs or working on our computers at her home.
My sisters and I decided that Day 4 was always the worst, for some reason. It was all we could do to stay that 5th day, but we made it. None of us regret any of it, but, finally, it was apparent that we were not able to give her the best care. We just didn't know what to do at that point. We had already called in Hospice. They were monitoring her and seeing to it that she had a bath and proper medications. They were giving us the best advice to help her, that they knew to give. It just seemed that with everything we did, she continued to deteriorate quickly, beyond our expectations. It was physically, emotionally, and mentally challenging to all of us.
I can't even imagine what Mom was going through. She would get so angry and would try to push through every door in the house trying to get out to go "home." She would tell us to get our stuff and get out and that she didn't need or want us there. We had to physically restrain her at times to keep her in the house or if we were walking her outside, to keep her from heading for the street. She would see people in the house and just knew that someone was trying to kill my sister, even remembering sitting in the police car after they caught the guy. She was convinced that there was someone in the house and asked me to get my gun (I didn't) and go look behind all the beds and in the closets and make sure the doors were locked, which I did.
We learned after a bit that when she had hallucinations, just to believe what she was saying, because to her, they are real. We even had a crowd including children that came marching through her room, at which time she told me to hurry and get our suitcases, because we were going with them and one night when it was cold, she told me to let the children in the front door so they could get warm, then go get their fathers who were on the back porch to come get their kids. She saw big holes in the wall in her room and the side by side refrigerator on it's side in her floor, but all was okay before she got up. The walls were repainted while we were in bed, too. Someone had put a "black wash" over all of her pictures. ( We learned later that her sight was affected by the disease.)
These times were difficult because she really saw and believed they were happening. (The doctor told a story about someone that had seen a circus outside of his window every day and when he was asked to describe one of the people there, he told in detail the print of one man's shirt, down to the color of the buttons. It's a little spooky.)
There were, also, times when Mom was five years old, lived in the house where she was raised with her siblings and parents. She would speak in a little girl voice and think we were her siblings. Sometimes we were the "help" in the "home" she was being kept in and her sister was having to work there to pay for her to be there. (My aunt came over to help with the house chores like laundry, dishes, sweeping the kitchen, etc. while we cooked and took care of Mom.) We had her daughters' names but were not her daughters. We took turns being the bad one. Whoever had the 5 day shift was always the bad one. She would call for the other two when they were not there. Sometimes she hated me. Sometimes she asked for Sharon, looking right at me, but I was not who she wanted because I was the help.
Then there are the times when we helped get her out of bed and into the kitchen or bathroom or even the living room when she was feeling good that day. It was hard to get her up and down 2 stairs into the living room, but she did okay for a while, usually not wanting our help, but we stood by just in case.
The most difficult thing we had to do, however, was make the decision to find somewhere to take her, so she could get the best care, especially since we could not give it. Once we found the place and figured out how to pay for it, a great weight fell off our shoulders. Within a week we had arrangements made and in her more lucid moments, told her about what was going to happen and why. She agreed it was the best thing to do and it would give her the opportunity to help someone there, as well. That's my mom, the world's caregiver to the end.
Watching the transfer ambulance pull away with her in it, was absolutely the worst day of my life, but it was a good day, too, because now she could get the help she needed at this point in her illness. I am now waiting on the results of my COVID test to meet the requirements of the place where she is, so I can go for a visit.
Hospice is concerned that we don't know how bad of shape she is in. We do. The brain is dying and so is she. Jesus will welcome her with open arms to her new home in Heaven and she will never shed another tear. Knowing she will be there, helps to accept that this is the last leg of her journey and her pain and confusion will be over.
Takeaways from this experience include making sure you and your loved ones have valid: *Medical Power of Attorney
*Durable Power of Attorney
These have to be obtained while the person still has the mental capability to sign one. A Guardianship is much harder to obtain after the fact. There is an Emergency Guardianship available and I had my attorney on standby just in case we needed one.
*Look into VA benefits if dealing with a veteran or their survivor (Contact Patriot Angels)
*Long-term care insurance, if they can afford it
I hope that this post has given you a new perspective about Alzheimers or Lewy Body Dementia. Dementia refers to a group of diseases, not all the same. However, all are heartbreaking when you know the person that you love, forget they love you.