I was reading 2 Corinthians 1 today and Paul wrote:
"All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. When we see that you are just as willing to endure the hard times as to enjoy the good times, we know that you're going to make it, no doubt about it."
My husband and I were caregivers to my mother with dementia. We had plenty of hard times, but also times of healing comfort in the Lord. I believe, as Paul said, that we are going to make it. I hope that if you need encouragement, that you too can "make it.” Maybe this story will help. Perhaps I can be there for you by telling you about what we went through.
I don't know that I have words to really convey to you the true depths of despair that we found ourselves. How utterly impossible the task given to us appeared; how we were convinced that we were not in any way capable of being caregivers to my mother lost in the darkness and confusion of dementia. But God did come alongside us and brought us through. He is truly the God of all comfort, and as it turns out, it was for our benefit. We learned that we couldn't depend on our own strength or knowledge to get us out of it. We were forced to trust God totally. He taught us who we are. Many times we found that we didn't like what we saw in ourselves, but He changed us as He called us to “embrace.”
My mother worked until October 2004. She was 74. She loved her job working in a nursing home and always said she just loved to give them hugs. It was within weeks of her retirement that we noticed a changed in her. We thought it was depression. We were not able to get her to participate in any daily activities. She just chose to stay in bed most of the day. When she did go out, she started forgetting where she was going, forgot appointments, or went on the wrong day. We still thought it was depression. We repeatedly urged her to go to her doctor.
After some months of either just lying around in bed, being extremely angry and having no apparent control of her emotions, she did go to the doctor and he ran tests, but did not make any kind of diagnosis, at least none that we were aware of. It was several months later that he called and said that he wanted to talk to us. He suggested that we take her to a neurologist. That was in the fall of 2005. This doctor said that she was in the early stages of dementia, the very early stages, and she was started on medication.
Her anger, depression and confusion increased to a point of exasperation for us. She screamed at me so much that I began to cringe every time that she came near. "You are trying to kill me! You haven't given me anything to eat in weeks!" she would yell every two hours (after eating). When I say eating, a normal breakfast was scrambled eggs, grits, sausage and coffee. Then she would yell in two hours that she hadn't eaten "all day." This kept on day after day for months, and she ate constantly. This was going on while she was also accusing me of trying to kill her by not giving her medicine. I would give her morning pills and in about 5 to 10 minutes, she would come to ask for her pills. I would tell her that she had taken them. She would scream at me that I was lying. This activity continued for at least 2 to 3 hours every morning. She screamed, I prayed, and she screamed some more. She told me I was evil, that she hated me, that God wouldn't listen to someone like me. And this was only the beginning.
We took her to a psychiatrist, at the encouragement of the neurologist. He told us that, with respect to her other physical issues, she most likely had vascular dementia. He said we should expect an "exaggeration of her already morbid personality." I guess that here is where I tell you that my mother smoked and drank heavily for many years. She had multiple surgeries because of blockages in her legs, kidney and neck. For many years, Mom took antidepressant, sleeping and anti-anxiety pills, along with all the blood pressure and heart medicine. During my childhood, her moods changed rapidly and she did attempt suicide at least twice that I remember. She was the product of alcohol addiction and drug abuse. So when that doctor said that her behavior would be an "exaggeration of her already morbid personality" . . . well . . .
I just can't really tell you how many days I prayed for God to work a miracle and somehow make this nightmare go away. I tried to calm her by singing hymns, reading the bible, and tried talking about things she liked. None of it worked. Even with medication for the dementia, anxiety, and sleep problems, it just got worse.
She began to hear voices and see people who weren't there. She told me about a friend who had visited her. This friend had been dead for over 10 years. She talked about people coming out of her closet. She said that they kept her awake all night talking to her. She called me Mother. She complained about the boys who jumped on her bed all night. I can't remember all of the hallucinations, there were so many.
She started asking to go home; we were home. She changed clothes over and over again (when she had any on at all). There were clothes everywhere. So I put a lock on her closet door. She took knives out of the kitchen and carried them around with her. We had to put a lock on that door also. She hit me. She shoved my husband. She threatened both of us. She also accused us of stealing from her. Day after day, over and over again, same things again and again. Oh, and she hated showers. Screamed and cussed me every time, "You are trying to drown me! I hate you You b_ _ _ h. You're the meanest thing God ever put on this earth! I wish I never met you! I want to get outa here!"
She would hit herself in the head and scream a piercing scream. She couldn't find her clothes, which were not only placed out for her, but also, I pointed them out to her as she dried off ( all with help, course). She couldn't find the bathroom, so I put a sign with a picture of a toilet on the door. She wandered out of the house at night, so we had to change the locks on the doors to key locks. She urinated in trash cans, and did that while looking at the toilet. She defecated on the floor, so we removed the carpet. She wiped feces on her bed. She also started lying on the floor. We thought she was falling, so we installed closed-circuit cameras to be able to watch and hear her in her rooms. What we saw was that she was sitting on the side of the bed and sliding onto the floor, then she would yell "help me."
There’s more, but possibly I have been too graphic and maybe I've said too much. It all happened. If I hadn't been there, I wouldn't have believed it myself. So maybe that is why our politicians aren't so ready to help with this most horrific disease - they haven't been there. Maybe you haven't either. I do hope that it never happens to you, but if it does, there is hope.
The most important hope is in Christ. He comes alongside us and carries us through. If He hadn't been with us, we would have never made it. But there is another hope. We found the Alzheimer's Association organization. There are people who can help not only the one with the dementia, but also the caregiver. They offer encouragement and hope. But they also have help, in the form of education, respite care and day care information, financial information, publications about dementia and where you can go for other types of help.
We found a program that cares for those with dementia. They were a blessing beyond belief ! The place we found is local to our area, and they offer respite services and day care services. I remember the day that I talked with the director of the program. I asked her "Have you ever seen the movie, 'Groundhog Day'?" She hadn't, and maybe you haven't either. But in this movie, Bill Murray is a man having the worst day of his life over and over again. Of course, it taught him compassion and made him a better person (eventually). Being a dementia caregiver can break you, but it can also make you.
When my mother became a part of the day program, she was able to be with others during the day, and I was given rest from her nearly constant agitation and the disturbance she made in our home. She was able to interact with others, play games, and do activities that helped with her memory. It was a time of refreshing for me and a time of "fun" for her. Our community is blessed with having this program available. It is affordable, based on social security income, and it is a safe environment.
My mother did better with the help of this program. We were able to keep her living with us at home until her death. My family believes that we are given the responsibility, by God, to care for our own. We were able to do so, with His help, and with the help of the wonderful people at the adult day center.
In caring for my mother, I learned a lot about whom I am. I found that, with God, all things are possible. He does work miracles In the last months of her life, my mother and I spent time praying, singing hymns, and I read to her from the Bible and devotional books. She loved it! I know because she smiled. It was a time of healing for all of us who had spent time caring for her. We find ourselves now remembering the times that we were able to laugh and enjoy fellowship with her.
I wish that she never had to experience the dehumanizing effects of dementia. I wish my mother could have enjoyed her old age, could have remembered her grandchildren and her great-grandchildren. I wish that she could have remembered that I was her daughter. She always knew my name, but lost the ability to understand the relationship. I wish she could have remembered love. I wish that there was never such a disease, but since there is, I wish that there was a cure!