Group helps families affected by life-changing, debilitating diseases
As with many illnesses there seem to be more and more families being affected by life-altering diseases, and one of those diseases is Alzheimer’s along with other forms of dementia-related diseases.
Two Marshall women have found a bond which was forged as a result of their husbands being diagnosed with Alzheimer’s; Karen Hurst and Robin Moon have walked in one another’s shoes and know from firsthand experience what the trials and challenges are when dealing with the effects of this dreaded disease.
“My husband was a teacher for many years while we lived in Iowa, and as the illness developed, we both knew something wasn’t right, but it took us eight years to get a diagnosis. That was very frustrating and it was particularly difficult when my husband’s friends remained in total denial about the changes we saw taking place. For me, it was so hard not having anyone to talk to about it. If my husband or I brought it up and tried to talk with our friends about things that were taking place they would just make excuses and couldn’t seem to address our concerns at all. Our sons lived far away at that time, and though they listened and had concerns and did a lot of research, I still felt the need to talk face to face and ask questions of someone,” said Hurst. “Once the disease advanced to a curtain stage we knew we needed to move back to Minnesota where we were originally from. My husband and I both graduated from Russell High School, and my husband, Wendell, got his teaching degree from Mankato before we moved to Iowa. That made a big difference; our one son moved back from California to help with his father’s care, and the other son lives in Minneapolis. It was a huge weight off my shoulders not to be the only caregiver 24 hours a day. With the help of our sons we managed to keep my husband in our home until the last three months of his illness. His care took so much time, and it was much easier once he was placed in the nursing home. Then we had time to wrap our minds around the whole ordeal and come to terms with what was happening.”
“It is hard to explain. Even though you know it is not your fault, there is always some guilty. You want so badly to change things, but there is a feeling of helplessness and guilt. Like the steps they talk about when someone is dealing with grief, the denial, the anger, the fear, all those things come at you with such force. It is not something to try to deal with alone. It affects a large circle around the person that is ill, family, friends, co-workers, neighbors, there are just so many people affected by it,” said Hurst.
Hurst and Moon have learned the value of support through the Caregiver Support Group that meets on Wednesday mornings from 10 to 11:30 a.m. in the Courtyard Café at Avera Medical Center in Marshall. Hurst remains active in the group even though her husband passed away in March 2014.
“It is amazing the number of people that have come to the support group. It isn’t just for those from Marshall. It is open to anyone, and we have people come from Tyler, Slayton, Clarkfield, Montevideo and Granite Falls. Being such a rural area the group is for anyone who wants to come. Some have spouses with Alzheimer’s or some other form of disease, and some are children trying to help a parent, and others are siblings of someone who needs care or even friends. We all have a common ground of wanting to help and needing help ourselves. There is no need to call ahead or preregister or anything like that. It doesn’t matter how often they come, and it is just an open door kind of thing. We always have a facilitator, Jaen Weilage or Melissa Maranell, that kind of keeps us on track or might have a topic we can connect with. It is very informal, and it sort of restores you. There is also a confidentiality agreement so there is no sharing going on outside of the group. They also stress that we meet and accept everyone where they are at. It doesn’t matter where you are from or what your life is about. We are all there for one purpose, support and information,” said Moon.
For anyone wishing to attend the support group there is adult respite care available at Avera Morningside Heights Adult Day Service for their loved one. There is no fee for this service when used for the support group. It is requested that anyone wanting to use this service, call ahead (507-537-91340) of time so adequate staff is on hand. The Alzheimer’s Association reaches out to those affected by other disorders, such as Parkinson’s, frontotemporal dementia, Creutzfeldt-Jakob, normal pressure hydrocephalus, mixed dementia, and dementia with lewy bodies. Information can be found at www.alz.org or 1-800-272-3900.
“One thing that I think made it an easier transition for my husband, Lon, when it was time for him to be placed where he could get the care he needed, was the fact that he had gone to the adult day service for some time. They do a lot of activities with the clients, and we just always referred to it by saying. ‘Today we go to the activities.’ So when it was moving day we simply went to activities as usual and then we went to the new location, Bolder Creek, and said we were going there for activities, and he was very comfortable with the whole thing and that made our two daughters and myself feel like we were doing the best thing for him and for me,” said Moon. “That is one thing the support group always talks about, that fact that the caregiver is under a physical and emotional strain, and it is very important to take care of ourselves.”
“Some people seem to think that they can avoid getting the disease if they do certain things like staying active and keep doing things to keep your mind sharp, but both of our husbands were teachers and enjoyed things like reading and puzzles and so on, but it just seems that if you are going to get it there is really nothing that will stop it. The association of course does continual research, but there are still many unanswered questions, but it makes you feel better just knowing that there is a huge effort being put forth to help treat the disease,” said Hurst.
“I have to agree with that. My husband taught in Marshall for years. I also taught school so we were both always reading and continually learning, and Lon loved puzzle and mind games. He could always recognize faces and loved anything to do with phonics,” said Moon.
“Getting a diagnosis can be hard. Often, tests will come back inconclusive, and you have to be very persistent and look for the right doctors. Lon knew there was something wrong, but the disease doesn’t always act the same, and it can be hard to diagnose. The support group encourages everyone to keep trying because early diagnosis is important. It can be hard to find the right doctor. There are not a lot of doctors that specialize in Alzheimer’s. I am not sure why that is, but I sometimes wonder if part of that might be that there is no set treatment that can reverse it, and there is no cure. So it would be a hard thing to face with each and every patient. With many other disease, like cancer, there are at least some that get better and that has to make the doctors feel better too. The support group also covers things like getting a handle on financial matters and taking care of things like power of attorney,” said Moon.
“There are just so many things the group helps you work through. We had a large ottoman in our living room, and the grandkids would jump on it and that seemed to agitate Lon so much and then someone told me to just simply get rid of it for the time being. It was such a simple thing after we thought about it. The disease changed Lon’s personality, and he became aloof about things. I am sure he was trying to deal with a great deal of frustration. But you always feel like you need to stay one step ahead and that is almost impossible to do because you never really know where you stand, and things change day to day. Once it became apparent I could no longer take care of him I turned to my church family, and they prayed for us, and I was lifted by that, and the girls and I knew I was doing the right thing. There is a lot of guilt; you wonder if you are doing everything you can. Grief wells up, and guilt can do the same thing sometimes,” said Moon.
“Another thing the support group does is provide a lot of material, and libraries are also a very good place to find material. We were all very excited to have Jolene Brackey come to Marshall. She has been very active and has a lot of first-hand involvement with people who are dealing with the disease,” said Hurst.
“Though November is the month we dedicate to national Alzheimer’s awareness, it is important to be aware of the disease every day. Through an effort to meet needs we have been able to move our support group from a monthly to a weekly. When it was monthly and someone who wanted to come was unable to for whatever reason, it was such a long stretch to wait for the next one. With it being weekly it just makes the support readily available. I really appreciate the effort that Karen Hurst and Robin Moon put forth that made it possible to present the acclaimed speaker and author, Jolene Brackey, who presented in Marshall on Nov. 17. Her book, Finding Moments of Joy, is very insightful and a good read for many people. The Alzheimer’s Association has made great strides to assist the public in finding the resources available,” said Weilage.