Dementia In Real Life

My daddy had dementia and I was honored to care for him and spend a lot of time with him for the last 3 years of his life. This gave me the life experience, along with years of working in hospitals, nursing homes and with geriatric populations. As far as education, if this were all not enough, I am also a doctor of audiology with extensive training on geriatric diseases and problems and psychology, as well as having a bachelor’s of science prior to that in premedicine with training in this arena also.

All that to say, I know dementia/Alsheimer’s Disease (one type of dementia). I know a lot about it and can answer any questions anyone has, just ask in the comments and I will answer you.

But I wanted to do an educational lesson on dementia because it is very prevalent in our older generation and creeping into earlier generations also now. Robin Williams, Lord rest him, brought attention to dementia also, which he suffered from and caused his severe depression and anxiety and suspicion, leading to his taking his own life.

Dementia is an attack on the brain. It is affected partially by neuronal degeneration and partly poor circulation/blood/nutrient flow. Different neural connections affecting the start to misfire and occipital orbit of the brain (the back area of the brain where memories are stored), eventually effecting even involuntary regions of the brain (hippocampus) down deep and the body forgets how to function and death ensues. Due to a number of genetic and environmental factors and variations within every person, the rate at which this happens varies tremendously, lasting from a decade (or more and that longer duration is generally with medication- Gingko Biloba the best over the counter treatment and perscriptions newly developed) to year(s) in duration.

During the progression of the illness, the person’s managers start to shut down and automatic or knee jerk reactions take place, along with the frustration of not remembering and realizing something is wrong, so tempers can flare irrationally. Depression sets in until they no longer remember what they were depressed about. The entire time, all symptoms come and go. Memory comes and goes. Why? Because as neural connections break, the brain still tries to reroute those synapses and still work again. This happens until the options to reroute are expended.

Dementia is progressive, how progressive depends upon treatment and genetics and personal environment during their lifetime.

In my dad’s case (and again, every case is different), he was angry and depressed at first and later was happy and just pleased as punch to have someone there taking care of him, becoming like a kid again. I think he saw me as his mother or at least a caregiver at the end. Many other patients have had to be fed. Daddy only got to that point at the end, the last week really. So again, very individualistic.

What can you do? Work with the treatment plan. Help them take medication because they will forget or remember they took it when they did not. Make sure they bathe for real and not just say so. Make sure they brush their teeth. Make sure they eat and drink and not just say so. They are not lying, just are remembering wrong. Make sure they sleep (schedules also become flipped, where they want to sleep in the day and stay up at night). Make sure they are safe, not trying to get up if falling is a risk (-for us this was when we finally sought a nursing home and hospice, you simply cannot be there 24/7 when their sleep schedule is upside down.)

Checklists work in early stages and work for the caregiver all the time.

Be a listening ear. Their stories are real to them. Their dreams are as real as their reality. Play along. They will remember what happened in their childhood much better than what recently happened. Just go with it. I always came into the room with a big smile and hug and a greeting “Hi, Daddy, your daughter Tonya is here!” Some days he would remember who I was and some days he wouldn’t, but regardless he would always say “I know who you are” and laugh. Keep things light and let them feel and normal as possible. Honor them by treating them with dignity and love. God is giving you the blessing of their past and presence until He calls them home. Praise Him for this. And get some exercise and time alone with God.❤

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Time with Daddy

Before my Daddy went to Heaven, I had a lot of invaluable time with him. It wasn’t invaluable because we had deeply wise discussions because he had dementia and gradually lost his memories, recent first and then past. What made it so special was that I got to see who he really was inside and his spirit. He loved Jesus. I know this because even when all his memories were gone, he still talked about Jesus and going to heaven and expressed great morality in his limited speech. And I got to see the pure base of love that God creates in a heart that loves and serves Him long term. It was beautiful. And in being so close to Daddy as his physical body diminished, I saw a renewing and resetting of his spirit, almost like he could see Jesus sometimes and I believe he could. And in my arms, he transitioned over and it was the biggest blessing of my life. I want to keep other older people company who are suck in bed to comfort them and learn and love on them. Older people are such an extreme blessing and what they teach us is worth more than gold. ❤

The Song of Missing

Daddy, I watched you go. You waited for me. I cared for you as you suffered, unable to care for yourself for two years. I helped keep you at ho e as long as possible, where you most wanted to be with your family. You came here. God sent you down because He knew you needed me to love you out. God knew my arms were the ones you needed around you to take care of you as the stroke and dementia took control of your life. Hardest decision of my life was when we finally had to put you in a nursing home. It felt like giving up but we could not do it all day and night every day and night anymore and my husband kids needed me too. I got lost for a while in the constancy, then I got lost in the feeling of giving up. I know it was the best choice as staff was always there and it was such a good place. But watching your mind go was so hard, Daddy, my Pilar of strength, my hero, my protector and Champion. I was your girl always and I miss you so much. Daddy, I know you are enjoying heaven and I am so happy you are whole and with Jesus. You have no frustration over being stuck in a bed. You are free and running. You no longer have the loss of your amazing singing voice. You are singing songs now better than anyone else up there. You are home in Heaven with Jesus. I sang you there and held you out. What a blessing you were to me all my life, Daddy. Thank you, God, for giving me the best Daddy in the world. I know Jesus is coming soon and I will see him when you decide it is time. I am so full of life and love and am as hopeful about life as full of tears streaming down my face. You are good, God. You were so good to me to give me as long as you did with the best Daddy in the world. Thank you.

The Forgetting

So today, I visited my Daddy as is my custom for 2 years now, as that is how long they have lived here and that is how long he has been sick. I am so thankful that I have been able to care for my daddy in his home as long as he could be there now in his new home in the nursing home where he can get 24 hour care. But today, for the first time ever, I was met with blank, empty eyes that did not know who I was. Dementia is a horrible disease and I knew this was coming, seeing it in so many patients and understanding the clinical aspects of it, syptoms, knowledge, I know more about this hateful disease than most people do. But. All my head knowledge flew out the window when my hero of my life, my sweet Daddy, my champion and the only man on the planet who has not betrayed me in some way, this man did not know me, his baby. It is rare that my emotions get the better of me. But I can tell you I am a mess. To my closest loves, I rarely unleash my heart, it is difficult for me because I feel so strongly and most cannot handle that. But. Right now, if I don’t let this sadness out of my heart, I may break under its strength. All day around people, no matter where I went, people were, good people, some amazing people that help, my sisters, my best friend, my children, all are amazingly important to me and helped so much but this therapy of screaming to the world in text that I thought I was ready for my Daddy to go to heaven but I am not. It about killed me that he diidn’t know me. My champion. Who will be my champion? Who could love me like that? No one can. I am not lovable enough for anyone else on the planet to love me like he has my whole life. I have been so fortunate to have such a Daddy. I have not always been the best daughter but he never stopped loving me so much that it gave me wings. I could never have accomplished all I have in life without his support and knowing he was there loving me, my hero. A girl needs a hero who she knows she can run to if it doesn’t work out and just be loved and taken in and held so tightly that no harm can get in. Why does this disease toy with us? It is a horrible thing. I lose him in seconds, in minutes, and it is not what it was. My base of support is crumbling and I am a lost little girl holding out her hand for her Daddy and Daddy can’t come this time. He is lost in his mind. He is fading away. And I am left here to watch him trail off. My tears flow as I write, my nose runs, my heart physically hurts me. Torture would be easier to take. Physical abuse I could handle better than this. This is a slow shredding of my heart. And I write this down not to torture you also but to voice words for pain that I cannot say the words to. My mouth cannot say but my fingers are my voice. Maybe you have such pain for whatever reason. Voice it somehow. It has to get out of your mind. It has to leave your body somehow or it consumes and becomes a stronghold or rift in the balance or change in your psyche. How you see the world can change if it stays in there. My tears are slowing as I type. I am realizing that the release of the emotion is as important as the capturing of them. Water flows in and must flow out. There must be balance. Where there is balance, the catcher is not thrown down when the next pitch comes in. And I realize that I still am loved. My support structure may no longer be one man, my Daddy, buuut it is many friends and family members and my love and those who love me and have shown such amazing support during this difficult time. And please continue praying as my mom has surgery to remove her breast cancer as well during all this. Life keeps going. It changes. When I was young, I thought everything adults did was mundane and repetitive and boring. HA!! I could use a little boredom right now. I wish I had been right. lol Laughter heals. I firmly believe that, there is proof. So, I will not live here, though I am definitely here for a visit with grief. I will visit but I will not live here. Dear God, please grant a fast transition through it!

Screwing Up and Other Novelties I’m Good At

So, I have this bold and fearless chip in my brain God put there and at first I thought it was in addition to my functioning brain. Apparently that is not the case. It was in exchange for a part of my working brain that tells me maybe not to do something or say something. “Just because you can, doesn’t mean you should” rings out in my head a lot lately, especially at Walmart. But I digress. You see, I do and then realize protocol was not followed. Sometimes that matters little. Other times, like several instances of late, it matters a great deal and can cause a considerable amount of damage and harm to pretty much everyone. It is amazing how many instances can never be undone. I love the line in Megamind where the bad guy genius Megamind says sorrowfully that he had looked into a reset button but the science is impossible. It would be beautiful to take things back, undo them, unsay them, do them better, say them better, be more clear. How perfect would that be! But alas, life is much less like a computer and more like an old fashioned typewriter, where mistakes may be covered but you can still see them forever. I am glad God forgives that way, choosing to forgive and forget wrongs when asked. I wish people were more like God in that way. It leaves one feeling like you are constantly having to guard everything, slipping into a ridiculous PC (politically correct not personal computer) rut. So, prevention is cure and I need to guard better how to ensure people are feeling loved in my circle, in my scope of experience and realm of nurturing. It is easy to let one’s guard down or forget other people in the mix of what is happening at the moment unintentionally and screwing up becomes easier sometimes than breathing. But a few moments of reflection prior to committing to a word or action can save much trouble in begging forgiveness. It is a novel thing to forgive. God thought of it first but when it happens here with people it is novel, seems very much like a big deal, like that person is the most generous person in the world where we should all be practicing it every chance we get. More novel is the art of forgetfulness. My daddy has dementia and is bedridden in a nursing home, bless his heart. He forgets and has peace from his forgetfulness. Things don’t plague him like they did, worries don’t bind his mind, troubles bounce off his heart because he has brain induced/illness induced forgetfulness. How peaceful and happy he is most of the time. How free of feeling trapped in his body being unable to get up and do this or that as he used to. He is blissful, thankful to be visited, happy to be fed, loved. It would be delightful to carry a little of that into our minds when we pleased, a selective ability to choose to forget wrongs done against us. What a relief that would be! But until people ask God for that grace for it to become a reality, I will probably continue to screw up and continue earnestly to try not to. And I would hope with all my heart that my people, my tribe would know my heart enough to feel loved and know that my screw ups do not reflect a cessation in love and care but a momentary carelessness I do try not to participate in but that finds me regardless. I love you more not less for putting up with my screwups. Thank you. Please forgive me and please try to forget. I will try to be worthy of this generosity and understanding.

The Ugly Waiting

The hardest thing of my life, harder than failed relationships, harder than natural childbirth, harder than my miscarriage, harder than dealing long term with difficult people, harder than toxic people that force themselves into work or relational spheres, harder than the death of my beloved pets, harder than recovering from rape, harder than years of criticism, harder than all that. The hardest thing of my life has been hands down the ugly, long drawn out wasting away through dementia of my daddy. His body is still with me in bedridden wounded and lesser form, his words are hard to come by and labored, his mind comes and goes in dream or present states, he recognizes me but sometimes knows why and sometimes wonders why. The waiting is painful, like a torture for me, daddy’s girl. He has always been my rock, my hero, my strength, my constant supporter, unconditionally loving me, showing me that a man can indeed be faithful to a woman, my mom, against all odds, that a man can put much more emphasis on giving than getting, that eternal things matter much much more than temporal things, that strength of will and stealth of mind matter more than what people ever think anyone is or should be capable of, to fight for those things we hold dear, to believe this country is the absolute best country in the world. This man of such high moral value and such incredible strength of character and body is my daddy. The shell of him wasting away in the nursing home sometimes resembles this man and sometimes resembles a knife being thrust right into my heart. Pain was never so real to me that my whole body aches as what I feel with this waiting game. Visiting as much as I can for those moments where a conversation makes some sense, longing to share my world with him and knowing it is a shadow to him, somewhere in a haze. And it makes me wonder why God is waiting to take him home to heaven. Is there something else I need to do for him? Is there something he hasn’t worked out that I need to help with? Is his will stronger than his body is allowing and he doesn’t want to leave us unprotected? Questions stroll in to try to make sense in my mind of what is killing me to see. It is a mental torture to see someone you love so much in a trailing off, descending state. Physical torture would be easier to bear. That I could overcome with my mind. But this mental torture involves my mind which is too distracted to help much of the time. So I wait. I visit. I take the kids to visit. I sneak in his favorite treats. I love this man that reminds me of my daddy. I celebrate good days. I cry bad days, like today was. It hits me hard every time, a reminder of what is gone forever but still hanging on somewhere on the way out. I smile for people so they don’t worry about me. I laugh. I don’t want other people to hurt over my pain. But writing it here expresses it so it doesn’t keep eating me. Maybe someone else needs to cry. I will cry with you. I am crying with you. I am waiting ugly with you. You are not alone. I have to remember I am not alone. Feels like it though. God helps those who mourn. I attest to that. It’s true. So I am not alone. Neither are you.

Doggie Visits for Daddy

Today my kids and I brought Lucy (my Dad’s little gray yorkiepoo) in to visit him in the nursing home. It had been a week or more since we did so. The dog did not greet Dad, who had been her favorite place to be when he lived at home. She had to be held on the bed for him to pet and still then would not look at him. She looked away, very uncomfortable and very not wanting to be there. And my mind wonders whether dogs know something we don’t know or sense something we don’t sense or if it is a matter of him just smelling different in a different environment. And my mind races to wonder at these things. And because of this nonwelcome, my dad ended up wiping a tear away and felt she rejected him or didn’t remember him. His sadness was more than I could bear. And on top of trying to work with this scenario, my mom was unknowingly demanding my attention to serve her and take care of what she wanted. So, I smiled my best smile and kissed Daddy and took Lucy home, knowing that I would not be repeating such a visit that caused more sadness than happiness. And the pictures I brought him of Lucy will be a better happier memory for him than her presence. Sometimes empathy dictates action and something which sounds good on paper does not work well in life. And happiness should be emphasized in the last days, months of life and not press upon it that which brings grief. So, out of love for my Dad, Lucy will remain home. Sometimes, as with my children, you shelter those you love from harm sometimes. Wisdom is knowing when to do this. And I long to be wise and hope this is the trait I am using in this decision. I know my Dad better than anyone but Aunt Barb, his sister, and were he still of his full mind, he would decide this for me if our roles were reversed. Sometimes loving someone best is not forcing their hand to accept that which you think is best versus that which is indeed best for them. It is unwise and unloving and impractical to push a rope. You may momentarily win at something, feel good for a moment, and if you weren’t paying attention may think you were doing the right thing, but right for you may not be right for them. I am not talking about right versus wrong, which line should not be blurred, but right according to your prescription versus what the person you are caring for actually needs. My Dad needs peace and calm and love and visits that promote these things. Sadness is not one of those things. Lucy is precious to him and always will be but sharing her memory when she cuddled him and slept on his bed may very well be the best time with her. Moral: what is best for you is not necessarily the best for someone you are caring for. Taking care of them implies you are looking to their best interest and not your own. So, there it is. And I will continue to wonder at Lucy’s bizarre reaction and what that means, realizing that dogs understand many things we do not in ways they can only communicate to us through their behavior. My Dad taught me that.