Husband watches as his wife of 62 years slowly ‘fades away’ from Alzheimer’s
Alzheimer’s is a disease that doesn’t discriminate. It’s the deterioration of brain substance because little parts of the brain dry up. You lose communication with whatever part of the brain that is, and that’s the part that’s affected in the body.
Dr. Ray Lindeman, of Paynesville, whose wife, Mary Lou, has Alzheimer’s disease, said it affects the delicate parts of the brain, such as thinking, remembering and talking.
“Those are the things that go first. The physical part isn’t as quickly affected.”
It’s usually a terminal thing, he said, and gradually it’s just a matter of them wasting away.
“Eventually they can’t eat very much or don’t eat much – they just fade away. They forget how to do everything, very few things are spared,” he said.
His wife is in the nursing home in Paynesville, and he has moved into Stearns Place, an assisted living home that is connected to the nursing home. His house was too big for him, he said, and this way, he can be close to his wife.
Alzheimer’s is such a sad disease because there is nothing you can do about it, he said. He took his wife to the Mayo Clinic five years ago. That’s when they found the first signs. The symptoms have gradually increased. She forgot how to cook entirely. Then, her voice and talking disappeared. Eventually, he put her in the nursing home because she couldn’t take care of her dressing or bathing and things like that anymore.
“It took someone to help take care of her, and I have muscular dystrophy to the point where I couldn’t do a lot of physical things, like putting on her shoes and clothes. It wasn’t possible anymore.”
He described muscular dystrophy as a progressive disease that starts in the muscles of the lower extremities. It brings on a progressive weakness. There is no known cause, no known cure, and it progresses eventually to all the muscles in the body.
“Usually it takes many years for it to progress. I’ve had progression now for six or seven years, have had some obvious things, first of all tripping and falling easily,” he said.
He has a walker he uses for short trips and a motorized walker he uses for longer trips.
“I could not sensibly come from my room at the other end of the building to the front door without being completely exhausted. It serves my purpose well and puts me close to Mary Lou, where I can visit her whenever its convenient.”
Dr. Lindeman said he doesn’t know sometimes if his wife knows he’s been there or not. “I’ve sat there for two hours, and she has slept right through it. That’s alright, I’d rather have her do that than struggling in anyway at all.”
He went on to explain that Alzheimer’s is one of the dementias, and actually one of the most prominent dementias, and can run in families.
Alzheimer’s has been around for a long time, he said, and it was originally discovered by Dr. Alzheimer, who had a patient who had what they typically now see as Alzheimer’s disease. “When she passed away, he took control and did an autopsy to see what her brain looked like, and he described everything that happened. It ended up being called Alzheimer’s disease because he discovered it.”
He went on to say the brain shrivels down, gets to be very small.
“There are what they call tangles and plaques and stuff like that which deteriorate so there are no connections between things that should be connected.”
There are millions of connections in the brain, he said, so it doesn’t take much to disrupt the whole process.
When asked what starts it, his reply was “You could be famous if you found it out.” There is a lot of research going on, he said, and right now a group in South America is working on research. “They found in a village or community where the people inter-marry, they’re getting it earlier and earlier. They’re doing a lot of research down there, and the best we can hope for at this point is they find a way of early diagnosis and then possible treatment.”
He said Alzheimer’s can start as early as 20-25 years old. Usually it is older, he said, but it can start that early. The brain just shrivels up, and there are no two Alzheimer’s alike.
“I’m so grateful of Mary’s process. It makes it a lot easier for the caregiver.” Lindeman went on to say he’s seen cases where the older grandmothers in their 80s or older were just the sweetest little old ladies you ever saw in their normal life, but when they developed Alzheimer’s they began cursing, swearing, screaming, hating and not knowing anybody. They were just totally different people, he said, and again, it depends again on what part of the brain is affected because everything that happens in our body is controlled from the neck on up.
He said where his wife is concerned, the scans they’ve done show there is a shrinking of the whole brain. They aren’t finding much localizing, and her symptoms, other than speech, are not localized.
“They involve a little weakness in the limbs and confusion at times.” He said living at home with her was a challenge to say the least.
“I prayed that I could take care of her as long as I could, and I did. As long as I could take care of her at home I did, and when I could no longer adequately take care of her at home, I knew we had to have help.”
He said she never did get up at night and do silly things, but sometimes there was difficulty to get her to come to bed.
“I called her Mrs. Clean to a fault. I’d finish supper and do the dishes in the dishwasher, and she would go around the counters and clean. She could clean for a half an hour, and the only time I ever saw her get a little bit angry was one night about 10:30 p.m. We had eaten supper about 5:30 or 6 p.m., and she was still out at the sink, wiping and cleaning stuff. I tried to get her to come to bed, and she got a little huffy at me. But I went to bed, and she came right after me. That’s the only time I saw any anger in her face.”
At times when he visits her in the nursing home, she knows him, but there are days he doesn’t know if she does.
“Some days she’s very alert and will smile, and I can give her a kiss and get one back, and the next day she doesn’t even know I’m there. You never know what to expect.”
That’s one of the great things about caring for Alzheimer’s patients, he said, there is no set procedure or reaction. “If you get someone with a broken hip you pretty much know what you can and can’t do because most of them can still talk, but with Alzheimer’s, from moment to moment, you just don’t know what’s going to come out, and you need to be prepared for anything. It’s really difficult.”
Lindeman said his wife got to be more forgetful and when she found she couldn’t remember cooking is when he realized she had Alzheimer’s.
“That was the first I noticed something was wrong. There weren’t any major things happening; it was just gradual deterioration,” he said.
When asked if researchers would ever find out what causes Alzheimer’s, he said the magic word is “ever.”
“For my part, I know its going to be 20 years too late, but like most things, eventually they will.”
He said the fact that it is the brain makes it very difficult to study, and there are no medications or such. In research, the medications they have found to take care of the plaques also destroy good tissue.
“It has to be so strong to kill the Alzheimer’s part of it that it destroys the good stuff too, so it was worthless.” He added, “There are a lot of things that still go on, and we don’t know why they happen or what to do about them.”
There’s no immunization for Alzheimer’s at this point. Lindeman said they’re almost positive it’s not caused by a bacteria or a virus – those can be cultured out. You can find those, but there’s nothing to be found.
“It’s very likely something in the brain but it may not be the brain, maybe someplace else that picks out the brain.”
There are a lot of theories, he said, but nothing is sacred as a possibility. “They’ve almost all been investigated by now. There is a lot of research. There are some doctors in research that have devoted their life to find a cure for it.”
Alzheimer’s is progressive, and there are stages. “It’s a disease that’s very unpredictable. What would be a normal stage for one patient might not reflect in another one at all. Totally different. That’s what makes it a little bit confusing because you can’t localize it, except it’s in the brain.”
Dr. Lindeman said his wife doesn’t realize she has Alzheimer’s.
“At this point, I’m involved in the emotional part. It’s created change in my life, too. I have lost my best friend literally, figuratively speaking. She’s still her, but the best I have are the memories of what she was like.” He added, “When I look at her, I don’t look at her as an Alzheimer’s patient. I look at her as a person I’ve loved for 62 years. Something’s missing and that will never disappear, of course.”
Making a diagnosis on his wife or anyone with Alzheimer’s, he said, is like working with pediatric patients. “The patient can’t tell you anything. You have to go with symptoms.”
Dr. Lindeman, who will be 95 years young in June, said he keeps hoping and praying they will find a way of slowing down or stopping the disease. “I think to myself ‘Do I want it to slow down? Do I want her to continue to live in that condition on and on and on? That’s not for me to decide. I’m thinking more of my side than her’s, and I will miss her terribly when she’s gone.”