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The Upside of Dementia

 

There’s something good about dementia, you say? If you’re caring for someone who has a memory-altering condition, the idea that dementia has an upside may be puzzling, infuriating or, perhaps, even insulting.

Let me explain.

I didn’t have personal experience with dementia until my late mother-in-law developed the disorder in her mid-80s. My grandparents didn’t have dementia nor did my parents. My 92-year-old dad, who I write about frequently, still lives semi-independently.

Everything I knew about dementia was what I’d written about. And it seemed bad—really bad. All those behavioral symptoms like agitation and repetition and confusion sounded horrific. Stories from family caregivers I interviewed just brought those horrors to life.

So when my mother-in-law Camille started developing some of those symptoms, I was frightened. We didn’t live in the same town, but family who did live there kept her at home – with caregiving help – for years. Finally, they no longer could. Yup, I thought, she’s going down the path that so many others travel.

Camille in her care community.

Camille spent the last three years of her life in care facilities. First, she was in an assisted living community and then in skilled nursing care before she died last fall at age 93.

Placing her in a care community was difficult and left me plagued with guilt, for one important reason. When I became engaged to her son, my mother-in-law made me promise never to put her in a “nursing home.” It remained one of her biggest fears.

So when she had to go there, I anticipated she would be devastated. But she wasn’t, in large part because she didn’t fully understand where she was. Chalk that up to dementia. All Camille knew is she was at a place where people were attending to her needs and caring for her. And, as long as her anxiety could be controlled, she seemed content.

Like many others with dementia, Camille spent much of her time in the distant past. She often focused on the funny and the sweet, the quirky and the quaint. She loved talking about her four decades as a Dairy Queen owner and all the “girls” who worked for her.

She harkened back to swimming with her brothers in southeastern Nebraska’s sand pits near the Blue River and the antics of her many dogs like “Sam,” the German shepherd who guarded her home.

She sang favorite songs such as “You Are My Sunshine” and entertained dinner tablemates with Czech words and phrases. When she wasn’t in physical pain, she was mostly in a happy place emotionally.

But, once in a while, during a moment of lucidity, you could see the realization in her eyes. The understanding of where she was. And that was painful. When we arrived one day, a favorite nurse – Jenny – said my mother-in-law had asked her: “This is an old folks’ home, isn’t it?” Jenny said, “yes,” to which Camille responded: “I don’t belong here.”

But often I think she really believed she was home. She would mistake the buffet in the care community guest dining room for her cabinet at home. She’d ask us to get in there to find something for her.

And one night she wandered out of her room across the hall and was found looking through a closet. It was something she might have done at home.

I hate to say I gained an appreciation for dementia watching my mother-in-law. How do you appreciate a disorder that robs those we love of so much? But I did see some silver linings. How about you? Have you found anything good about dementia – anything for which to be thankful?

One thing I do know is I have dementia to thank for easing my guilt in breaking a 30-year-old promise to my mother-in-law.

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Thoughts and stories from others
  1. October 7, 2016 at 7:21 am | Posted by Karen

    Dementia isn't an either/or situation. My mom died of Alzheimer's. It was awful AND had we had good moments and experiences.

    Reply

  2. September 13, 2016 at 1:05 pm | Posted by Amy Bach

    The accidental care giver A guide to surviving your loved ones illnesses. We all have at one time or another taken care of ailing family member. It's usually thrust upon us. We jump in with both feet and try to save the day. I've been attempting to save the day for 8 long years. My parents are both in different stages of dementia, I hope that some one can take something positive away with them. This past week I was blessed with 2 more family members to give care to. There are different types of care, there is the nurturing type, the physical type, and of course the advocacy type, not to mention the "go for" type. Often it's all four. Let me begin with my first labor of love, my husband. He hasn't been is not feeling well. We've gone to the Dr four times. The Dr says he's ok, the electrocardiograph, shows normal activity. The Doctor says he has a good strong heart. He goes home with antibiotics. This goes on for a few weeks, we prop up the end of the bed so the gerd is not so bad. It doesn't help. For the first time ever he agrees with me to let me take on a ride to the hospital. He is immediately admitted with congestive heart failure. While waiting for a bed he has his first stroke in the emergency room, unbeknownst to me. He now has a Cardiologist! He is transferred to a different hospital to have an angioplasty and it's discovered that open heart surgery is in order right away. This results in a quadruple by pass! The first of many problems arise, The cardiologist tells me that he may not be in our plan and we may have to pay out-of-pocket. I am frantic, my husband is dying! I say do what you have to do. Within three days he is in the brand-new cardiology suite. His heart has been plumbed He is the third patient. Whoopie! After a week of watching him trying to cough he's confused and his nurse is losing patience with him. I am stressed, scared, fearful, alone. I forgot to take out the garbage and realize the dog has no water. That's his job not mine! But, he's not there. I'm on my own. A week goes by he is stable, they are talking about sending him home. What do I do with him? I'm not a nurse, what the hell do I know about this? It's time for him to be discharged from the hospital. I am totally unprepared to handle a 250 pound man that can barely walk. Something is very wrong with his mind, we think it's the anesthesia. I don't even know who the new person is, he is so different now, weak, vulnerable. I discover that there are people called discharge planners and social workers that can help me with this problem. His insurance will cover five days in a rehab. If anyone has ever had to leave someone they love in a rehab/nursing home it can be one of the most heartbreaking thing a person has to do! I see my husband sitting at a table with old men and old women preparing to eat dinner. He looks like he fits right in, only he's 20 years younger than them. He supposed to be there for a week I get a call in three days telling me that they're discharging him now. The insurance company won't cover a longer stay. I run to get him, he's in a wheelchair, he doesn't understand what is happening. I'm given so many pills for various things, a list of people to call to arrange visits from an in home nurse and physical therapist. There are so many Drs to follow up with. I have no idea what the pills are for and why are there so many different types? 10 days later we are at the cardiologist. The Doctor says its ok for him to go back to work! I ask the Doctor how can you send a man back to work, to operate heavy machinery when he can't even put his shoes on the right feet? I get a puzzled look and a neurologist's phone number. My husband in la la land, I'm in what the hell is going on land. Surprise! His CAT scan shows that he has had strokes in different parts of the brain. Strokes that are just bad enough to prevent him from walking well, enough brain damage to ruin his eyesight so that he can't read or drive, enough damage to effect his short term memory and ability to reason. Once a skilled mechanic, he can only direct me how to do the household repairs that were once so easy for him. Then the bills arrive. I am crushed with the responsibility of caring for him and finding ways to get help. I'm on the phone w insurance companies, Drs, well wishing family and friends. I am drowning! I'm afraid that we are going to lose everything! This is how I was introduced into the world of care giving. Sounds awful right? Can things get worse? He's a stubborn patient intent on living the life he was used to, smoking, drinking, he wants to drive and eat crappy food. He's a sulky child, I'm the bad mommy. I stand firm on the no smoking, I'm successful! We never had kids, I learn to be a parent quickly. I'm the heavy, his mother coddles her 55 year old son by giving him home carb loaded cooking and sweets. He's a diabetic on a pump! I groom him and help him dress. Fight to get him into physical therapy. He doesn't help himself! They kick him out. I'm angry all the time, I'm exhausted. No fun, no sex, nothing but food, to make me feel better. No I don't gain 100lbs, but, I can sympathize with stress eaters fully. Each year or so something new arises health wise. He loses a kidney to cancer, As a result of the operation he develops a hernia the size of a volleyball and he can barely walk, even though he can barely walk from the effects of the stroke. We repair the hernia. Our "new normal" begins. Then prostate cancer rears its ugly head, radiation awaits, his other kidney is beginning to fail. That's his second cancer. My husband has the constitution of a bull. He keeps on going. By now I have gleaned enough knowledge about his conditions, that I am able to speak to Drs and Nurses using medical terminology. Is this enough of a horror story for you? While all this is going on, you might at some point ask how is wifey dealing with all this? This is when I get to share the ways I've learned to cope, be effective and not lose my mind. I consider my options, run away? Stick him in a home? Hire someone to help me? Hire someone to kill him? He can be very difficult. I make up my mind that the only option for me is to honor the promise that I made when we got married. The most difficult thing for me is to practice patience. I'm not a religious woman, but I am a spiritual woman. I believe that you should do the right thing no matter what. I believe that tough love is important. I also believe that instilling a little fear in your loved one goes a long way. He's afraid of me sometimes! It's easy to spoil, or do everything for your person, that only wears you out, and makes the more dependent. Pay attention to what the Drs say. Ask questions even if you think they are dumb. Always keep a list of medications, Drs and any health related events in chronological order with you. It comes in very handy. Reach out to friends and family. Get your hair done Keep your nail appointments Take walks Go to the gym. Don't drown your sorrows too often. Sleep as much as you can. You are not alone, everyone has been where you are, give or take. Don't sweat the small stuff. You are the boss! No matter what anyone says don't forget that it's their problem not yours. Cry privately Cry on your friends shoulder Don't hold in the fear. Avoid the "what if "pit fall. Your person will not die if you leave the house to go shopping. Accept help from people Take moment to enjoy the little things, the sky, a tree, a flower, you get the idea Nothing lasts forever. Concentrate fully on what you are doing. Live in the moment! Follow your gut instincts Always remember that you have the right to a life. Everything will be ok if you let it be ok. When I began to share my experience I wrote that I was blessed to be caring for 2 more family members. When I say blessed I mean that I am lucky I don't have to learn how to navigate through the medical system . I have my tools. I have the right attitude. I'm terrible but I can't help but mimic some of the outrageous things that my wards have said or done. That's comic relief. Being silly lightens the load and puts things into perspective. Of course having the support of my friends and family is the most precious gift of all, next to my own good health. To those that are just beginning their journey as a caretaker I hope that you find this writing helpful. Remember we only have today, we have the CHOICE to make it the way we want it to be, happy, sad, overwhelming I'm the goddess of my world, a wise powerful woman, I can survive this and find joy in my life, and, can feel proud myself for keeping myself free! What is your choice?

    Reply

  3. August 9, 2016 at 4:48 pm | Posted by Lyn somers

    I have to disagree my mam died as a direct result of alzheimers 4 years ago on St Steven's day she thought she was at the hall door but it was the upstairs window and fell.Im glad you found an upside but I struggle to find one.

    Reply

    • August 11, 2016 at 11:53 am | Posted by Georgene Lahm

      It is a terrible disease, Lyn. I am so sorry for your loss. Thank you for sharing.

      Reply

  4. August 8, 2016 at 11:33 am | Posted by Judy's girl

    So much truth! When my mom's needs were being met, her anxiety was low. Her personality was generally light-hearted and enjoyable. All rules and promises can and should be broken. Fortunately for those with dementia, they don't know what care they will require when those promises are made. Thank you for your directness about something close to my heart.

    Reply

    • August 9, 2016 at 12:01 pm | Posted by Georgene Lahm

      Thank you for sharing, Judy's girl. Everyone's story is so very unique. Best wishes to you!

      Reply

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