Loved One With Dementia
Everyone of us has a loved one or Knows someone with a loved one with Dementia
If you or someone you know has a living or past loved one with dementia, you have felt the pain that we go through watching someone we love progressively debilitate slowly before our eyes.The sorrow, the guilt and the total feeling of helplessness pervade. Or, you could have a loved one who became demented immediately, they were in a car wreck, had severely high fever, had an oxygen starving coma, insect bite, or sports injury. The list goes on ad infinitum. Some say that it doesn’t matter. ” If you have Dementia, you have Dementia.”
My personal experience goes something like this.
I woke up at 4:30 AM, Seattle Wa., With my girl friend”s head resting on my chest the way I usually slept. I slid out from under her quietly and slowly so as not to wake her, got dressed and went to work. When I returned she was asleep where I left her. I took a shower, grabbed a cocktail, banged on the computer for awhile and then sat down in my sooo comfy leather recliner. I realized, obviously that I had fallen asleep because it was 4:15 AM the next morning. I went upstairs and made some coffee, grabbed a mug and went down to get ready for work. Since I Hadn’t talked to Joey since Two nights earlier, I decided to wake her up an talk a bit before I took off . She would not wake up, would not respond. I immediately called 911 and called my work taking sick leave. Then I freaked out, cried, cried and cried and broke things. The aid car came and took her vitals and her blood sugar reading. It was very, very low. After some calls to the emergency room doctor she was rushed to the hospital and determined to be in a diabetic coma.
I will continue to share my experiences with a loved one with Dementia but first let’s talk about how we can try to do our best to overcome our heartbreaking situation. One of the first things I realized after a lot of trial and error was to not treat Joey like a patient. It took over a year and a half, Joey being hospitalized or institutionalized for two plus years. I’m sure that this is or will be a difficult process. It is as much a mind set as it is a process. Many of our friends treat our loved ones like a puppy. I’m sure many of us “baby talk”to our loved one. When we start treating them like a person they begin to feel good about themselves. Joey cried every day for months. She went to sleep and woke up in a horror show, a bad nightmare. She couldn’t eat, walk, talk, toilet herself, etc, She knew something was terribly wrong and that no one was helping her. There may be very little that we can do physically or mentally, but we can be fun and funny around them and work diligently to find something that makes them happy and makes you proud of your compassion. I learned an now facilitate mindfulness groups. I used it with Joey and had very good results not only for her but myself. I also see a psychiatrist weekly to receive and learn CBT, Cognitive Behavioral therapy. I think, for the sake of our sanity we need to do something with them that makes them feel good as well as you, and you enjoy it.
A very important component is to share our experiences with others who are in similar situations. In that regard we are starting a forum where we can discuss our experience with others, pick up helpful ideas and most of all have communion with others like us and help each other.
We will also make reference to professional material, articles, books videos and other helpful media for your review and comment as we will do.
Please leave your comments and address and receive answers in personal communications and on the forum.
I can’t wait to hear all about you and your loved ones.
LP
Recent Comments
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After reading your story, I can only say that you are a beautiful person, with all the dedication and love you have for your wife. Joey is very lucky to have you in her life.
I do not have any personal experience with dementia or similar disease so I can only imagine what you are going through. My heart is with you...
Joey is not my wife and she lives in an adult family home. Thank you for the lovely comment. I am touched and I can tell that you are a very compassionate person as well. I look forward to knowing and working with you.
Larry
Sorry for my mistake...
I know it costs stay away from our loved ones but when they need daily care and someone always at their side, an adult family home is the best option.
In this matter I went through the same with my grandmother. She lived in my home but she got to the point that she couldn't do anything alone, almost not moving ... it cost me "the world" but I also have had to put her in an adult family home and it was the best for her... it wasn't any particular disease just oldness...
I think we are getting/giving off ESP messages to one another.
This is a reply to one of my messages.
LpriestPremium 18 days ago Thank you very much for your comment. It seems that you and I have a lot in common. I love the way you verbalize your compassion. In the last year or so I have been beaten near to death by psychologist, psychiatrists, case workers, etc. to do exactly what you point out in the last part of your comment. I have, with the exception of Cognitive Behavioral Therapy, built my whole life around Joey and helping her to be all she can be, given the parameters she has to work within. I do work out a lot so I am physically in good shape. The care seems to be habit forming.
Thanks again for your kind comment. I am sure we will communicate often in the future. Best wishes for success with WA.
I feel for you Moma. We have both been there. We have the hats and t-shirts to prove it. I get the sense that you have balance in your life concerning your brother and your life. I am working on that. I have a lot of catching up to do. Thank you for being there.
Larry
I can tell you that music is very good. Especially music that was meaningful to both of you. When we would play the old songs my mother loved with and enjoyed, she would come to life and tell her stories. Her mind would come alive and she would get up and get Dad to dance around the room as they did when we were kids.
We also took her outside everyday in familiar places... that seemed to help as well. We would also do painting and drawing, play scrabble, etc. She lived many years with it. It is not easy, but I think the sense of being surrounded by love is very calming and important for those that suffer from this disease.
Thank you for the link to this post. I lost my Mom from alzhiemers about a year and a half ago. Now My Dad is diagnosed with the same. It is a difficult disease at best. Thank You for sharing your post.
I am sincerely sorry for your loss. I hope to be back to my E- life in a couple of weeks. Best wishes for a Merry Christmas. I am glad to see that you have a life in addition to caretaking and grieving.
Hello Larry. My brother, an entire year younger than I is gradually fading, at a ever more rapid pace now, with early onset Alzheimer's. Breaks my heart. We are all blessed to have him be so loved and cared for by his wife who cherishes him and will not leave his side, that they will go through this heartbreaking experience together.
I have great admiration for you and your devotion to Joey. May your days be filled with moments that bring you both that moment of joy and may you be strengthened by the love you have shared. It saddens me that you have been hurt by this, I hope you will weather it with courage and yes, remember to take care of yourself along the way.
Linda
God bless your brother and family. We have to continually struggle to find some little thing that makes them fell good about themselves and try very hard not to let them see you in pain. Thank you for your kind comments.
Best wishes to them and you for future success with WA.
Larry
I am so sorry about what happened to Joey. She is very lucky to have you in her life. My prayers to you both. My father was diagnosed with colon cancer, had surgery, chemo, and radiation for that, but developed dementia after having some strokes. So I know how hard it is. Dad was my hero. He was a big, strong man I could always turn to and lean on, but after the strokes and the onset of the dementia, he became scared and confused, and started leaning on me and turning to me to comfort his fears. It was heartbreaking.
You're right in that you need to treat them like an adult and not a patient. And although dad didn't always know who we were, he knew that we were a significant part of his life, and he always knew we loved him. Its a long hard road to travel, and although you take awesome care of Joey, be sure to take care of yourself too. I found that caring for a loved one with dementia, or any illness really, can also be emotionally and physically draining on the caregiver. Be sure to give yourself some breaks and some time away to just breathe, rest and reboot. It will help you to be a better caregiver for her.
This was a great post:)
Thank you very much for your comment. It seems that you and I have a lot in common. I love the way you verbalize your compassion. In the last year or so I have been beaten near to death by psychologist, psychiatrists, case workers, etc. to do exactly what you point out in the last part of your comment. I have, with the exception of Cognitive Behavioral Therapy, built my whole life around Joey and helping her to be all she can be, given the parameters she has to work within. I do work out a lot so I am physically in good shape. The care seems to be habit forming.
Thanks again for your kind comment. I am sure we will communicate often in the future. Best wishes for success with WA.
Wow, powerful story! First of all I'm sorry for this horrible tragedy but I am so impressed with how devoted and compassionate your are, you are amazing! although I do not have any personal experience with dementia I can relate to watching a loved one slowly slip away. My mom passed away this year from colon cancer and I as her primary caregiver I helplessly watched her die a slow and very painful death. One thing you wrote that is true to anyone suffering from any type of injury or illness is to treat them with like an adult with respect, dignity, and most of all not as a patient. There are plenty of dr's around them that do that. I wish you both the best, with lots of love and light to guide you!
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What a sad scenario. Your experience I know has certainly been a life changing one. As you help her as a care giver a person can loose their own life sometimes trying to save and make another persons life more comfortable. There has to be a happy medium there and I hope your supplying that care in the proper doses to maintain your quality of life as well. Thanks for sharing and caring.
Thank you so much for your poignant comment. I have done very poorly on balance. I have been convinced somewhat by therapists. I almost believe it and am working very hard at letting go of the obsession of caring.
I hate to be a bother. I would appreciate it if you read my other blog and comment on my planned efficacy.
Thank you in advance for your future comments.
Best wishes,
Larry