If you have a loved-one who is experiencing memory problems to the extent that you are researching it on the internet we hope this article can help you. It is mainly aimed at those new to the memory loss world. Sometimes it comes on slowly and you don’t realize it but one day you realize you have a problem and you don’t know where to turn.
You see the purple ads for the Alzheimer’s Association—whether it is appealing for support for their “The Longest Day” or the “Walk to End Alzheimer’s.” or promoting their website. Until it hits you personally you don’t feel the magnitude of what memory loss can do to a person and then subsequently to a family. It can literally devastate a family and change their lives.
Alzheimer’s Disease presents itself in different ways but those who experience it know it is a terrible disease.
The disease has hit the sports world—former Mizzou head football coach Warren Powers is living with it. His wife Linda felt they could help others and raise awareness in hopes of funds to help in the fight for a cure by going public.
Also in the sports world, Pat Summit coached the Tennessee Lady Vols basketball team to an amazing 8 NCAA championships and retired with a record of 1,098-208—due to Alzheimer’s. She eventually died from it. Boxer Sugar Ray Robinson passed away from it at age 67.
In 1983 when President Ronald Reagan designated November as National Alzheimer’s Disease Awareness Month, no one could have known that years later he would be diagnosed with it and eventually die from it.
After 50 years in the music business and numerous Grammys it was announced that Glen Campbell has Alzheimer’s. He and his family tried to share his journey as he did a “Goodbye Tour” and a documentary during the time he had Alzheimer’s. According to Rolling Stone Magazine in March of last year (2016) “Almost five years after his initial diagnosis, Glen Campbell is now in the final stages of Alzheimer’s. Sources close to the country icon tell Rolling Stone Country that he has been in Stage Seven of the degenerative brain disease for some time now and is unable to communicate.” That was 10 months ago (from when this article was written– he eventually died in August, 2017.) It’s a cruel disease.
Alzheimer’s is not just a disease of old age. Families of those who experience it at a younger age are often completely ill-equipped to deal with it as it is not something they would expect to happen. According to the Alzheimer’s Association, younger-onset, which is also known as early-onset Alzheimer’s affects people younger than age 65. Up to 5 percent of the more than 5 million Americans with Alzheimer’s have younger-onset. With all of this there needs to be more funding for research.
Let’s say you are reading this and your loved-one has not yet been diagnosed but you see changes and you see he or she is in danger, but you are trying so hard to take care of her on your own. You may be growing frustrated because that person that you are trying so hard to take care of because you love them so much– is the very person who is treating you terribly. You are not alone and try not to take this personally. One common symptom of Dementia or Alzheimer’s Disease is their mind is not processing the way it used to so they see things differently. They see you looking in their drawers for their nightgown and think you are looking for money. “What are you looking for?” they ask in an accusatory voice. That person would never have suspected you of stealing from them but in their new state they may become paranoid and even crabby that you are around trying to help them.
Part of them might be able to reason this out: “hmm, I’m the mom and I’ve always taken care of my family but now they are treating me like a baby.” But the other part doesn’t understand they are slowly changing. They know something is wrong but get so frustrated because they are losing all control of their life.
You must realize it is you who much be able to change in your behavior because they can’t. You can try saying “stay on that chair” all you want and when they get up you can become exasperated because he or she did listen– but in reality, they can’t. Their memory won’t stay long enough to remember you told them to stay on that chair. So you will start sitting down next to them and coming up with activities to engage them– or you will go crazy trying to discipline them with no positive results.
Another common thing is for an Alzheimer’s patient who is happily married to suddenly start accusing their spouse of infidelity. It could be with anyone from an imaginary person to the pizza delivery person to YOU as they see you giving warm hugs to your other parent as he or she is going through the devastating time of seeing their spouse. in this situation.
If you have suddenly found yourself in the situation of caring for a person with memory problems, whether early dementia or Alzheimer’s Disease, there are so many ways you should secure your home. Depending on the stage your patient is in, you should go room by room and make it safe. This is similar to “baby-proofing” a house. It may require putting things away, if it’s a woman, hiding her purse — if looking at it makes her want to leave.
Often patients with memory problems get restless and want to “go home.” They don’t know exactly where they want to go but as a caregiver you should not try to make sense of it. There are many tips for dealing with a person with dementia and they are listed on some of the websites listed here and there are more resources in another article on this site.
If it is at all possible, try to do fun things with your loved one, and leave occasionally. When a family member is suddenly thrust into the role of caregiver the person can often forget exactly who you are. Because you are doing things that you would not normally do for the person, he or she may forget you are a loved one and think you are a care-giver. It is difficult, but try not to take it personally. One thing you could do is try to be the nicest caregiver so at least your loved one will have the happiness of friendship with you, albeit in a different way.
It is very important that you get respite so you are not always with the person suffering from dementia. People will say “take care of yourself” but you don’t realize what that means at the time. Sometimes it feels like you should not leave your loved one but in actuality it is better for both of you to take a break. It is very difficult to care for a person with memory problems by yourself.
Karl Fulton is dealing with his wife’s early-onset Alzheimer’s. While it is a devastating disease when it hits older adults, there are special challenges that come with the early-onset because the person is young.
“I try to avoid the poor pitiful me’ world, but you have no idea how hard it is,” he said recently. “Just try to imagine changing your spouse’s diaper, leading him (or her) around by the hand like a blind person, reassuring that there is no emergency to escape from at 4 am. It is really bad and the reality is that there is no hope.”
He says he feels hopeless “because there are no agencies to help me with this. Virtually all are focused on the elderly.”
He is doing the best he can to keep his wife at home with him. He has had to sell his large family home and bought a smaller residence as the experts tell him it would be safer and easier for her to be in a smaller space. He has been dealing with this for several years and she is in the later stages and it is wearing on him.
“Friends will pity you and constantly ask how she is, but they don’t want to hear the truth,” he said. “The truth is that she is dying, there is no hope and that we just don’t know how long its’ going to take (until she dies).
“The government will patiently tell you that no you don’t qualify for any of the programs that are designed to help because your loved one is too young and express their frustration at not being to help.”
Fulton, while from Missouri, currently lives in another state. Those who live in Missouri have some agencies available to them that they can take advantage of including the St. Louis Chapter of the Alzheimers Association, Memory Care Home Solutions, a not-for profit organization that seeks to help families, and the Mideast Area Agency on Aging. Dealing with a family member who has serious memory loss can be extremely stressful and often the caregiver is so wrapped up in helping their loved-one they don’t have time to quickly educate themselves on what to do and who can help them.
For those whose loved ones are seniors, the Mideast Area Agency on Agingis a great resource. They try to help made it as easy as possible for those who want to keep their loved ones at home so they offer respite (like babysitting so the caregiver can get a much-needed break) and help in many areas.
“Mid-East Area Agency on Aging has provided services for seniors, age 60 and older, since 1973 and added caregiver services around 2000,” said Mary E. Schaefer, the Executive Director of MEAAA. “We are part of a national network of area agencies on aging, over 600 agencies across the US., In Missouri, we cover St. Louis, St. Charles, Jefferson and Franklin counties.”
Their services are designed to assist people to stay in their homes as long as possible in health, honor and dignity. They received state, federal and local funding to provide those services which include meals, both at senior centers and in the homes for those who are home bound, transportation, respite care and other caregiver services, information on local services and much more. Those services are provided on a contribution basis and contributions allow them to provide more services than the federal and state funding would fund. They deliver over 2500 noon meals per day Monday through Friday and have over 500 volunteers who assist MEAAA in providing services.
The people who answer the phones at the Mideast Area Agency on Aging are compassionate and willing to talk and give ideas.
“We help seniors and their caregivers every day with our services, easing the burden of caregiving as well as providing nutrition and activities through our 21 senior centers,” said Schaefer. “The MEAAA transportation provides group rides to the senior centers and to other essential business and medical locations through a contractor with vans . The caregiver program has several services that assist caregivers of those over 60 with a variety of programs including respite, information on resources and much more.”
They work with several home health care companies and one is Cardinal Ritter, which has some great services.The respite program was found to be excellent with Cardinal Ritter and a tour of the Adult Day-Care showed a great way to get seniors out with others. This improves the lives of the seniors as well as gives the caregivers time to do other things.
“MEAAA is an important resource for seniors in our community which can help people know what resources are available to them as well as providing services through our agency,” Schaefer told STLSportsPage.com. “There is no one size fits all for us as we age. MEAAA can help find the right services for a senior and/or their caregiver as well as providing volunteer opportunities.”
For more information, call MEAAA to find out what services might be helpful. 636-207-0847 or go to their website, agingmissouri.org.
Living with a loved one with Alzheimer’s or dementia is extremely difficult and no one should have to go through it alone. This is the reason behind this article– and others on this page. We want to spread the word about the help and support that is out there.
Though there may be a drastic age difference for someone with early-onset as opposed to a senior who gets it –Fulton’s wife is only in her late 50’s– he is facing some of the same things that a family struggling to figure out what to do with their senior citizen-aged parent is.
Margaret Stauffer’s family began to wonder what was going on when she started showing signs of memory loss. She was in her early 80’s, and had been full of life and she loved going to activities at the senior center: bingo, concerts, happy hours.
“We weren’t sure if it was ‘just old age’ or if it was something to worry about,” said her son Bob. “To a certain extent there is a stigma about memory loss. Often when a person hears someone has dementia or Alzheimer’s disease they stop coming around or calling. We did not want that to happen to Mom, so we overlooked the little things, and tried to ignore it.”
Margaret learned to compensate and hide the fact that she did not remember names by calling people “buddy” or another nickname. Once she fell and broke a hip her dementia became more pronounced. She went in an ambulance to the hospital and then to a rehab center and all the changes continued to make her more and more confused.
After a few days in the hospital she was sent to a rehab facility, which on the outside looked very nice. The problem was they were used to housing people recovering from knee replacements and other situations, but not memory problems. So when her son went to see Margaret he noticed she was not in her room. He asked the aide where she was. Turns out she was asleep on the toilet with the “call button” in her hands.
It was up to the family to advocate for her. If you ever find yourself in this situation it is up to you to make sure your loved-one is safe, because sometimes they get lost in the system. This is why it’s so important to know what kind of help is out there.
After several months of hospitalization, rehab, and home health care it was learned she had Alzheimer’s disease and it advanced so quickly her family found it hard to cope.
Everyone’s experience with memory loss is different. When Warren Powers went public with his story, his wife, Linda said one of the big things she wanted to get across is ‘treat them as a person. They are still in there.” She advocates living with Alzheimer’s, as opposed to just giving up on the person, and is grateful for family and friends who continue coming around despite her husband’s devastating illness. She does her best to give him a fun and stimulated life.
One husband of a woman with Alzheimer’s said:
“I was under an extreme amount of stress as I discovered how far my wife, had progressed in a short period of time. She had spent 50 years running our household – it was difficult for me to understand how to care for her as our life was falling apart.
I remember feeling an immense amount of relief the first time I spoke with a Memory Care Home Solutions team member. They taught me how to care for my wife, and myself.”
Memory Care Home Solutions (memorycarehs.org) seeks to help people in crisis due to a family member suffering from memory loss.
They have a You Tube Channel: https://www.youtube.com/watch?v=C_jY0lhQyT0 to let people know about what they do. While Memory Care Home Solutions does a great job they are in need of funds to hire more social workers. Many of the first calls they take follow a crisis. Helping that family is crucial. The biggest problem is the need for their help far outweighs the manpower ( or womanpower) that the charity has to offer. It is a great organization and if a family ends up in a situation with dementia or Alzheimer’s a call to them early is a good idea.“Every dollar donated will go directly to serve families living with memory loss, dementia or Alzheimer’s disease in our community,” said Erin Kelley the Director of Advancement for Memory Care Home Solutions “Our donors have the power to significantly impact a family’s life RIGHT NOW. Over the last 14 years many compassionate, committed individuals like you have invested energy and resources allowing our organization to expand.”
The mission of Memory Care Home Solutions is to extend and improve quality time at home for families caring for loved ones with memory loss, dementia or Alzheimer’s disease.
• 54% of the caregivers they serve are adult children caring for their parents.
• 72% of those in the Memory Care Solutions program have a household income below $40,000.
“To meet these needs, funding and expansion of our program is necessary,” said Kelley. “No formal diagnosis is necessary and services are offered free of charge to everyone, regardless of income.”
When a devastated family member makes that call to Memory Care, they can get immediate questions answered and a compassionate voice will be at the end of the phone line. Often the first contact provides a much needed glimmer of hope amidst devastation.
Lisa Baron, Memory Care Home Solutions Founder & Executive Director, took part in a roundtable discussion hosted by the NineNetwork and facilitated by KSDK’s Casey Nolan. Lisa was joined by other experts in the field of Alzheimer’s disease including Stacy Tew-Lovasz – President, Alzheimer’s Association St. Louis Chapter; Dr. George Grossberg – Professor of Psychiatry, Saint Louis University; and Dr. Beau Ances – Assistant Professor of Neurology, Washington University School of Medicine. The discussion was was set to air on Friday.
A one-hour documentary, Alzheimer’s: Every Minute Counts, produced by Twin Cities PBS aired on PBS stations nationally Wednesday, Jan. 25, 2017. PBS describes it this way: “Alzheimer’s: Every Minute Counts is an urgent wakeup call about the national and global threat posed by Alzheimer’s disease. Many know its mind-robbing horror. But few know that Alzheimer’s is the #1 public health crisis facing America and the developed world.”
According to the Alzheimer’s Association (ALZ.org) “Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia.”
The Alzheimer’s Association has a website that if full of resources. They also offer a consultation with a social worker to talk to you and answer questions. There are listings of support groups in different areas of St. Louis on the site also.
Here is a link to that feature:http://staytuned.ninenet.org/episodes/alzheimers/
Dementia symptoms can range from mild to severe depending on the underlying cause. They can include:
· Memory loss
· Difficulty with speech and language
· Changes in personality
· Difficulty carrying out everyday tasks
· Refusing to eat
There is no cure for dementia but there are medications which can ease symptoms and slow down its progression. Dementia sufferers may be confused, unpredictable and may frequently act out of character so it is important to ensure you keep them comfortable and are prepared. This article provides more detailed advice on how to recognize the symptoms of dementia, how to communicate with and how to cope with your loved one during this difficult time: https://www.shieldmysenior.com/dealing-with-dementia/
For more resources for a loved one with Alzheimer’s: When a Loved One Has Alzheimer’s https://shar.es/1OVGlE
Other articles on STLSportsPage.com regarding Alzheimer’s Disease:
Warren Powers, former Missouri coach, is battling new opponent https://shar.es/1OejIe
Whatever happened to Wendell Kim? The sad story https://shar.es/1OejAt
To make a donation to Memory Care Home Solutions: http://memorycarehs.org/donate/?utm_source=Final+Annual+Appeal+Email+Winter+2016&utm_campaign=Annual+Appeal+Email+%234&utm_medium=email