Sunday, November 24, 2013

The Saddest Disease - Dementia


"I want to go home." That's my mother's constant desire these days as her dementia continues to worsen. She's not talking about heaven as some people might think. She's quick to say she's not ready to move up to heaven just yet. Most of the time, the home she's talking about is her mother's home where she grew up. This is a picture of Mom when she was around sixteen or seventeen with that mother she wants to see and her older sister, Evelyn. Mom's on the right and Evelyn is on the left. Evelyn went to business school after high school and she looks very business like in this photo. 
 
Sometimes, but not as often, the home my mother wants to go to is the home when I was a kid. At those times, she might be thinking my sisters and I are young and playing out in the yard. She needs to watch us and cook supper for my father. She can't understand why people keep telling her she is at home when she recognizes nothing around her. She no longer remembers where the bathroom is in this house where she's been living for over twenty-five years. The furniture is new to her, even those pieces that she's had since her early married days. She has no idea where all the knickknacks sitting around on the shelves came from. She's forgotten how and where she gathered them or inherited them when others in the family passed on.
 
Harder to explain, she thinks the pictures in the magazines are real at times and the people on television are actually right there in the room with us. She gets irritated at them when they keep talking and ignore her. Last week when I was here, I started watching the UK ballgame with her. By the end of the first half she was saying she thought it was time for those boys (the ballplayers) to go to bed. Usually by the time darkness falls, she's tired and resigned to staying at this house one more night.
 
I've quit trying to tell her that she is at home and just say we have to stay at this house. It's nice and warm. Has all the conveniences and yes, it does have bedrooms and her gown is in one of the bedrooms. That's always a relief for her. Of course, there have been times when she refused to put on her gown and wore her clothes to bed. I assume so that she would be ready to go when somebody finally remembered to show up to take her "home."
 
At first it was difficult for me to lie so blatantly to my mother. But now I say things like Dad's working late in the fields. Perhaps picking corn by the harvest moon. Or he's getting the hay in before the rain. We tell her that her mother is visiting relatives out of town. I tell her that we'll have to wait until tomorrow to go "home." When she says she drove the car down this morning or was just at the grocery store, I nod and pretend that very thing happened. When she says Ann came and got the kids, I say, that was good. 
 
I lie over and over again. But as I wrote on here once before, the truth no longer matters to my mother. She has lost all the truths of her life except for that dream of going back to when she was young. To when she was needed. To when life was fresh and easier. To when she can almost remember how things should be. She doesn't remember that time right either. It gets all mixed up with what's happening now and even what she sees on the TV when it's on. We often have to avoid or turn off the news so she won't identify with the bad things happening. 
 
So we continue taking it one day at a time and sometimes one hour at a time. And it is so very sad. I think it is harder for my sisters and me than her other caretakers because we know what Mom has lost. We know what we have lost. And we're sorry, so very sorry to have lost our mother this way. We still have her with us, but we've lost the mother who was our friend, our biggest supporter, our encourager, and maybe the mother that someday we will wish we could go "home" to be with.
 
I don't write about Mom too often here because it is so sad. But I know many of you have prayed for Mom and for me, and I appreciate that so much. Prayer has been the "medicine" that has worked best for Mom when things were really going south. So thank you all.
 
On a lighter note, keep in mind you can check out the Bookfun Network site and leave an answer there to one of my easy questions for a chance to win a copy of my book, Christmas at Harmony Hill. More opportunities to win the book or other prizes will be showing up so stay tuned or sign up for my newsletter if you haven't already. Also, you can still leave a comment here until Wednesday to throw your name in the hat for Jan Watson's books.
 
Thanks for reading! Hope you have a blessed and happy Thanksgiving!
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42 comments:

  1. I do know what you are going through and the frustration you feel. My father, older sister and younger brother all died of complications from Huntington's Disease. The living was difficult. Much like your mother, they lived in the past. Anger, confusion and fear was the norm. HD takes the brain, it deteriorates and as it does takes the mind and the body. Frustration on the caregiver is surmount. Lies were told almost every day. All of my paternal uncles had this disease, many cousins and now my youngest sister. Although, she is doing so very well! My heart breaks for you Ann. Your mother as well as you and your family are in my prayers. He will always be with you ~ shirley

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    1. So sorry to hear about your loved ones having such a hard time, Shirley. It is the anger, confusion and paranoia that are the hardest to deal with. Caretakers have to do whatever they can to get through the day. Perhaps I shouldn't think of it as lying but as soothing mother however works. Thank you so much for your prayers and kind thoughts. I'll pray for your younger sister. That must be really difficult for her to know what the disease does and to have to face perhaps going down that hard path. May they find better treatments for her than for those who went before her.

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    2. Thank you Ann and your mother will be in my prayers. Many blessings! OH! Happy Thanksgiving!

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  2. Hello Ann,
    I'm new to your blog, but getting lots of experience with elder care. Although we haven't dealt with dementia yet, we have been through Alzheimers, kidney failure/dialysis, general decline/weakness, feeding tubes, stubborness, financial issues, nursing homes, caregivers, and other old-age calamities, all with our parents, aunts, and uncles. We're still in the thick of it, with five of them ranging in age from 92 to 100! So, I sympathize/empathize with you! God bless you for all you're doing to care for your mother. There will be a reward someday. Joel Osteen says that if a situation is too hard for us to handle then God will remove it (1 Corinthians 10:13), so until He does, you (we) can do it! Hang in there!

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    1. Sounds as if you've covered a wide range of hard to deal with elder care problems, Nancy. I'm sure you are a blessing to them even if they don't or can't acknowledge that now. I do believe that the Lord gives you strength to handle what needs to be handled, but as that joke goes, sometimes I believe the Lord has too much confidence in me. The one good thing in your situation is that with so many elderly relatives, your own old age genes must be strong and you can expect to be around a good long while. We'll hope they find some better treatments for some of those ailments before we get there. Thank you for reading my blog and for your comment. I'll add your name to my hat for the giveaway drawing for Jan's books.

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  3. It is so hard to lose someone to dementia. Very hard to accept that loss and to accept this new person in your loved ones body. Prayers for you both.

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    1. Thank you, Jan. I appreciate your prayers and kind thoughts. And your comment too.

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  4. Ann - I lost my father to this disease in 1996 and I am still saddened when I think of how he didn't recognize me for the last several years. It is a horrible thing to watch a loved one so confused. And it is always more difficult around the holidays. I will pray for you and your family and I wish you peace. Hugs, Rachel Lepree

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    1. It is difficult to no longer be part of your parent's memory. I knew another lady whose mother was in a nursing home due to her dementia and what this woman wanted most as her mother was near death was for her to say her name just once. I have heard others say that their loved one did recognize them that one time before they passed on. I appreciate your prayers. It means so much to hear from those like you who have walked this path with a loved one. You understand in a way those who haven't dealt with it cannot. The sympathy is there. The good thoughts are there, but true understanding takes like experiences. Thanks for your words and hugs.

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  5. Having been there with my mother, the one thing the doctor told us I found to be of great comfort in talking to her: Remember, he said, that although it might not be strictly true, it is true for her, so humor her. It sounds to me like you are doing that. Prayers for you both!

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    1. Some things you learn through trial and error, Kevin. And that's what we've learned with Mom. Keeping her peaceful and not arguing is always best. When things aren't going well, keep hoping another five minutes will turn her mind back to a more cooperative state. Sometimes that happens. Something it doesn't. Thanks for your prayers and understanding.

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  6. Ann, We met at the Frankfort Senior Center during the KY Book Fair. I cherish this post. It is so on point for you and for my family. What love and care shows through in your writing. Peace to you and your mother and all her caregivers during this holiday season. ~ Carolyn

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    1. Thanks, Carolyn, for telling me how I know you. I can see you now. And I know you are having some caregiving worries of your own. Peace is what we all need for those suffering from dementia type problems. Thank you for your kind thoughts and sweet comment.

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  7. Ann, there are so many of us in this caretaker situation. You expressed the frustrations so well; don't think of it as lies, because it is what is comforting and calming. It is medicine!!! Thank you for your words.

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    1. You're right. It is medicine to have soothing words. Sometimes it's medicine that works and sometimes not. Thanks so much for your comment.

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  8. Now this is frustrating! I carefully worded my thoughts and now I have to do it again??

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    1. So sorry you had a frustrating experience trying to leave a comment. I know exactly how you feel for I've done the same in trying to comment on other blogs. Hope that won't keep you from trying again. I'm hoping you are the anonymous above and so your comment did come through. I'd take the thing off about reading the word and numbers or whatever you have to do here to comment, but then the spam really hits. Maybe I need to explore other options about comments. Thanks for letting me know your were frustrated.

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  9. My Mother is going through this and it's hard to see her become so agressive and angry at everyone.

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    1. That is without a doubt the hardest part of the illness - when Mom is angry and/or agitated. Next hardest is when she is sad because her husband no longer comes to see her. Of course, he's been gone for over 25 years. We did finally get some medicine through the doctor's help that has made mom's agitation better. I hope you'll be able to find something to help your mother too, although sometimes I think the symptoms come in weird cycles that nobody can understand.

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  10. My heart goes out to you. It is a blessing that she has you. Please take care and Good bless you and yours. You are in my prayers.
    annettena@yahoo.com

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    1. Thank you so much for your prayers, Annette. I appreciate that so much.

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  11. Sadly, I know exactly of what you are describing. My grandma is the same, and I have been with my mom the whole time dealing with my grandma going downhill all those years ago. Us three used to be so close and would do so much together - it is so hard to see her like this and not feel sad and hurt when she doesn't remember us or begs to go "home". She also "lives" in her childhood home and asks where certain neighbors are (long deceased ones). Now she is just a shell - which is even harder to see. I would love it if her Heavenly Father would call her home to dance and sing with a new, perfect body! I don't mean to sound horrible at all - just knowing her mind isn't even working just makes me sad that she isn't "home" yet. Thank you for sharing a touching post today - you made me think of a few good memories of when I was younger with her. :)

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    1. I hope you have many good memories, Susan, but as I said in my post right now that just seems to make the loss of your loved one that much harder because you know how she would be if not for the dementia. It is interesting to me that the desire to go "home" is so much a part of the dementia and so much the same in those suffering from it. And you don't sound horrible at all. Going "home" to heaven is the only way she'll find real happiness again and the only way they can re-united with those family members they are missing so much. May the Lord give her peace and you and your mother strength and patience.

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  12. One blessing is singing. I cared for a friend's mom so she could go to lunch with friends. When she got back, I said, "We have a Christmas present for you." We sang "Twinkle, Twinkle, Little Star" and "Jesus Loves Me." So touching to watch both of their faces. Kathleen

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    1. I've tried singing hymns, but maybe I need to try to get her to sing with me. Sounds as if you were a blessing to your friend and her mom. Always good to hear from you here, Kathleen.

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  13. Ann. I look at this is an ongoing mourning. My aunt is not the aunt I once had. Some days are good, some days not so good. I wish dementia was something no one ever had or ever had to deal with. We just never know.

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    1. It is just that in many ways, Melanie. Mom is still with us, but she's not the mom we've known. I'm with you. I wish no one had to deal with losing the memory of her life.

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  14. Ann, your post touched my heart so very much! I really miss my Mom sometimes it hurts. She went home to be with the Lord on August 30th, 2005. Sometimes it seems like last week & sometimes like a lifetime ago. She too had dementia but not, I think, to the degree that your Mom is experiencing it. I used to argue with her & try to correct her until I realized that she really thought she knew what she was saying was true. Like you, I learned (at least to some degree I hope) to just agree with her & try to make her happy. Her last 16 months were spent in a nursing home (though I hated it as much as she did ~ I had to work & could not be with her at home 24/7 like she needed) & I know she longed to go home with me where we had lived many happy years together, as a child growing up, but also in later years after my divorce when I lived with & cared for her. Your post brought tears to my eyes as I could so closely relate to what you are going through. God bless you. My heart & prayers go out to you & your Mom.

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    1. Sounds as if you were a very loving daughter, Mary. It is definitely difficult to care for a loved one at home when you have a job or you're doing it alone, because it is a 24/7 job. I honestly don't know how people can deal with the effects of dementia without a break in their day, but somehow those people pull of strength from somewhere. Thank you for your comment, Mary, and for your prayers and thoughts. They are much appreciated.

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  15. My mother-in-law lives with us and has dementia. She thinks the doctor on House is her doctor (on TV). She does exactly the same things your mother does. She doesn't remember where any of the rooms in the house are. She's quite fragile, too. But she's a true blessing! I can identify with what you're dealing with. At first it was difficult for me to tell her what to do. But now I realize it's simply necessary.

    She adores our adopted twin sons, age 18, who have autism and developmental delays. They really look after her and help her by reminding her to eat and drink at meal time. It's very cute.

    Thanks for sharing! It helps us to know we're not alone.

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    1. So glad you mother-in-law has your sons to make her happy at this time of life when things can be confusing. She's blessed to have you taking care of her and loving her, Karla. I wish that doctor on House would come up with one of his wonderful and surprising cures for her dementia. :)

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  16. Dear, sweet Anmn. I love you. I am so sorry for your mom. And so sorry for you and your sisters. I have always thought how hard it would be for your mom or dad to not
    know you. I saw how it hurt my mother-in-law when her mom was like this. She went to stay with her sister for awhile to help with their mother. She didn't know her the whole time she was there. She called her that other woman. Even told Aunt Helen once that she(mom) was trying to take her husband. Said she talked a lot about them when they were little children. Mom finally had it too. I think she realized when it was starting because she told them she wanted to go live at the nursing home. Said she was forgetting if she took her medicine. I am so thankful my children didn't have to go through that with their daddy. My mother's only aunt had it for probably 20 years. I saw her and was so sad. I think that my mother was always afraid she would get Alyzheimers. (it was talked about so much. Don't know if her mom would have gotten it for she died when my mother was just 5. Sure hated to lose her when we did, but I also thought of what she feared and that GOD took her home first. I was going to tell you GOD knows your lies are not really lies, but words of comfort for your dear mother. I will continue to pray for your family. Love you. Maxie

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    1. There are so many struggles we can have in life, Maxie. I've been blessed with many good things and so was Mom. But this has been a hard journey for her as she loses all she once held dear. If she could have known this was going to happen to her I think she would have been like your mother and wanted to go into a nursing home. But she never really realized what was happening although at times she feels very lost and confused. She still can't think that she's lost her memories. Thank you so much for your prayers.

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  17. Dear Ann, your post brings back such recent memories of my dad. I was his caregiver for several months and he to had dementia plus used a walker and was diabetic. Without a doubt the dementia was the hardest to deal with. I can totally relate to what you are feeling. I would like to tell you it gets easier but that would be untrue, so I will lift you in prayer and know you will get through this.
    Blessings to you and your family.

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    1. Jackie, nothing gets easier about dementia. Perhaps you get resigned to that and therefore accept the unhappiness of it with more grace perhaps. Mom uses a walker, but without us to put it in front of her, she would try walking without it. She doesn't recognize what it is when it's just sitting there ready to be used. Sometimes she thinks it's mine. Thank you so much for your prayers and sweet words.

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  18. Thank you Ann for your honest words. I know it is difficult to watch as the person you love gets progressively worse and worse. My family is going through a similar story right now.

    Both of my mother's parents (both in their 80s) have dementia. Fortunately they have not reached the point where they don't know where they are (they still live in their home), but I understand about the lying. My mom and her two sisters are trying to take care of them, and sometimes that means that they need to lie about something they have done or something my grandma has or hasn't done. My strong-willed, hoarder grandmother cannot understand why their house needs to be cleaned out or why someone is doing their laundry for her or why they had to get rid of the car or why they can no longer use their wood stove. Even getting her to wear a new pair of shoes because the heals on the old ones were broken was a fight. She couldn't understand why she needed new ones. Fortunately my grandfather is more compliant, but it is still difficult to see the man that I remember always helping out on my aunt and uncle's farm (formerly my grandparents' farm) as just a shell of his former self. For him, there's home and food--that's about all he knows.

    For the families--I see how hard it is for my mom and aunts to take care of them, struggling to fit in time to drop in and make sure their medicine is being taken or driving them to church and appointments while juggling a full-time job. I also see how hard it is for my uncle who lives in another state to only see them once or twice a year and see such a dramatic change in them from the last time he visited. It makes me wonder if it is almost easier to be by our loved ones' sides and get used to the gradual changes rather than only seeing them a few times a year and suddenly being exposed to the fact that they no longer know what a family gathering is or why they are there.

    My heart and prayers go out to you and your sisters. It's hard, but you're not alone. Always remember that.

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    1. Mallori, it is very difficult to deal with some of the things you mention. But it helps to remember that it is an illness and that the person hasn't chosen to be contrary or angry. Her mind has simply become ill. I'm sure you are a great emotional support for your mother. Sometimes it helps just to talk about the problems of care taking. Not for solutions but just to be able to talk about the problems and have an understanding and sympathetic ear. And while it is difficult for your uncle who can't be there to help with their care, I still think the burden is heavier on those of your family who are on the front line dealing with the illnesses each day. I appreciate your prayers and I will send prayers back your way for your grandparents and your mother and aunts. Thank you so much for your comment.

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  19. I am going through a similar situation with a close friend. I wanted to recommend a great book titled, "Rich In Years," by Johann Christoph Arnold http://www.richinyears.com. Very inspiring and has helped me learn how to better deal with my friend's dementia.

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    1. I'll have to check that book out, Becky. Thank you. And I hope you are able to help your friend.

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    2. You are welcome. Good luck to you!

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  20. My family is in the same situation and we have experienced a wide range of emotions since the official diagnosis of "Alzheimers".

    My mom was put on medication which has not helped. She has progressing aphasia and is losing her ability to communicate (or so they tell us) but at the same time, she talks and talks and talks about nothing. Or blends details, and dates and makes up an entirely new family history :) She is also becoming verbally aggressive and is very territorial.

    She constantly thinks someone is in her room, going through her things, so she "hides" her belongings. And then claims someone took them, when she can't find them again.

    The specialist we are seeing, suggested "The 36 Hour Day" for us to read. It helped some, but like childbirth - until you actually go through it, you cannot imagine or completely understand what it feels like. Every situation is different. What works for one, may not work for another.

    My mom has lost her love of reading and music. A year ago, she was still trying to read large print books. Now, they sit next to her chair.

    At any rate - so many of us in the same situation. It helps to know you're not alone.

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    1. So sorry you and your mother are having to walk this path. My mother couldn't take any of the medicine that is supposed to delay symptoms either. We tried a patch once and in three hours she was vomiting. Other oral medicines had other side effects that couldn't be tolerated. My mother talks and talks too and often doesn't make much sense. Her words are becoming confused and she'll say completely wrong words for things. At first she could remember long past days, but now, as you say, all that is mixed up too. She also gathers things that are "hers" and is very upset if she thinks you're bothering them. I think the thing about this journey that has surprised me the most is how similar many of the things the patients do or think. While all situations are different, the sufferers tend to have the same desire to "go home" to their childhood home. They get paranoid about people stealing from them. And on and on. It's all so sad. And we are not alone, and we can pray for one another. Thank you.

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