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    Angela Lunde

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  • Alzheimer's blog

  • March 8, 2011

    Caregivers' best gift is to accept reality of dementia

    By Angela Lunde

69 comments posted

Alzheimer's Caregiving

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Ann passed away last week. She was a vibrant woman who I had become very fond of. I first met Ann about four years ago when she and her husband, Wayne, joined Memory Club. Memory Club is a support and education program for persons in the early stages of dementia and their support partner. Ann always arrived with spunk, wearing colorful clothing and happy to be alongside her husband and part of the group.

Ann's disease continued to progress and although I saw less of her, Wayne remained a regular in our twice monthly caregiver support groups.

Wayne often said, as caregivers we either have patience or we need to acquire patience. Wayne believed he was one who would have to acquire it. As Wayne accepted this undertaking, he would frequently share his "lessons learned" with the group.

Most weeks, Ann would lose her eyeglasses and each time she would blame Wayne. Wayne would ask Ann to think back to where she might have left them. And sometimes (possibly with a little frustration in his voice), Wayne would remind her of where they should have been put. This encounter never went well. Eventually, Wayne learned that if he simply took responsibility for misplacing her glasses everything went much better. And in time, the glasses would eventually turn up.

About 8 months ago, Ann began packing to go "home" — no longer recognizing home as home. At first, Wayne would explain to Ann that she was home and her packing was unnecessary. This only made Ann angry. Wayne began to just allow Ann to pack. When she finished and was ready to leave for "home", Wayne would kindly suggest that they leave in the morning when they were both more rested. Ann usually liked this idea, being a little tired herself. During the night, Wayne would unpack Ann's belongings, anticipating the next day when they might repeat the same scenario. Wayne didn't mind.

And then there were times more recently when Ann would look at Wayne and say, "Where is Wayne?" In spite of the pain that Wayne must have felt when Ann no longer recognized him as her husband, he would assure Ann that Wayne was just fine and would be home soon.

You see, what Wayne learned over the years was that the most loving gift he could give his wife was a sense of ease. Telling Ann that she lost her glasses or that she didn't need to pack because she was at home, or that her husband was right there standing in front of her, didn't serve Ann at that stage of her disease. To the contrary, it would make her confused, angry and sometimes scared. Wayne learned that the best way to honor his wife was to accept her disease, which meant accepting her reality, and lovingly joining her there.

"Love is a great teacher."
- St. Augustine

69 comments posted

blog index

  • February 25, 2012 9:29 p.m.

    My loving and caring husband of 45 years is having short term memory loss and the doctor calls it vascular dementia. He does all of the dishwashing and when putting dishes away he is forever misplacing them. i tell him if he doesn't remember where a dish goes, to please leave them on counter and when i float thru and see it i will put it away. sometimes that works and sometimes i have to go on a search for a dish!!! if i am in a hurry, i admit to a little frustration but most of the time i can laugh it off. because when my husband asks the same question several times in a short period of time, i see that he is dead serious and doesn't know the answer anad does not remember asking it before, i find myself smiling at him and not answering immediately and he then realizes he has asked before and then we have a big laugh together. i just can't get angry with him because i know he doesn't remember........I enjoy reading the blogs not only for myself but for my sister who is a caregiver for her husband the past three years and i can relate what i have learned from you to her. i find prayer is the best medicine for me right now as well as taking it one day at a time and repeating to me and to my busband who still has it all together most of the time........"it is what it is and we are going to deal with it as lovingly as we can."

    - Jo Ann

  • May 11, 2011 10:41 p.m.

    my friend who has some kind of memory problem, her sister wanted to put her in a nursing home and my father who has AD midstage, my siblings want my father in a nursing home, I took them all in to my house thinking how hard can this be if we all work together and give a comfort of a home with home cooked meals. I feel privileged. I see them still enjoying their lives, I hope I can do this. It is good to see how I am not the only one to give home care.

    - tea

  • May 11, 2011 8:56 a.m.

    My spouse has had diagnosed dementia for about two years. I prayed for patience, but finally realized we don't get the gift of patience, we get the opportunies to practice patience! One of the things that has been helpful to me is to prepare a couple of folders labeled "finances" and "family." Into each I put relevant material, ie. a pension statement, a credit union monthly statement, etc. into the financial folder. In the Family folder, since he grieves the death of his mother as if it were yesterday(1994), I put a copy of her Will, photos I took of him at her gravesite, as well as the headstones, etc..and with flowers we placed there. This seems to help him a great deal. He can spend a lot of time every day looking at these materials and it saves me a lot of questions that are so repetitive and endless. He also loves to pray with me alternating the lines of the Our Father. He can remember this! And the praying out loud helps both of us!

    - Maureen

  • May 6, 2011 3:36 p.m.

    My Mother-in-law has had AD for the last 7 years. Physically she is doing pretty well. However, we are seeing her enter mentally in the severe stages. Everyday is a new adventure with her. She doesn't remember who none of us are, but she does know she is safe. She is always asking for her mom and dad, so we've opted to tell her they are on vacation. We are providing her natural supplements that help her with sundowning and sleep. She just loves to put away EVERYTHING! Folds and refolds shirts, napking etc. We just let her do that as it keeps her busy and entertained. However, she had the tendancy of putting almost anything in her month, frozen food, from the trash and even dog food...so everything needs to locked up for her safety. We just try to keep her safe and calm during the day. She thinks her husband is her dad and her son is a friend and that sometimes I'm her mom. Oh well, at least she still smiles and laughs. We just got to laugh and smile along with her. Got to remember, they do not know what they are doing, some words have no meaning to them, but they still have feelings.

    - Maria

  • May 6, 2011 3:32 p.m.

    My Mother-in-law has had AD for the last 7 years. Physically she is doing pretty well. However, we are seeing her enter mentally in the severe stages. Everyday is a new adventure with her. She doesn't remember who none of us are, but she does know she is safe. She is always asking for her mom and dad, so we've opted to tell her they are on vacation. We are providing her natural supplements that help her with sundowning and sleep. She just loves to put away EVERYTHING! Folds and refolds shirts, napking etc. We just let her do that as it keeps her busy and entertained. However, she had the tendancy of putting almost anything in her month, frozen food, from the trash and even dog food...so everything needs to locked up for her safety. We just try to keep her safe and calm during the day. She thinks her husband is her dad and her son is a friend and that sometimes I'm her mom. Oh well, at least she still smiles and laughs. We just got to laugh and smile along with her. Got to remember, they do not know what they are doing, some words have no meaning to them, but they still have feelings.

    - Maria

  • April 26, 2011 12:47 p.m.

    I have been diagnosed with dementia 3 years ago. I am scared to death,as time passes my wife will become Wayne and I will become Ann I do not knowingly or unknowingly hurt my wife. I know I drive crazy asking 20 times a day where do I stand with this disease. Where have I been and where am I going. Wayne, I take my hat off to you and your wife and your support of Ann and your coping skills Lou

    - lou

  • March 25, 2011 11:16 a.m.

    The story about Ann is so true. I take care of my mother. She's in great shape at 101 but is always losing something too. Now I understand more about her problem. I will try not to get so frustrated. She also was packing her things. I kept putting less back in her closet. It makes it easier to put it back. I told her I will throw out her clothes if she keeps doing it and she stopped. Now she misplaced her bottom teeth. It's been a week. I have to cook special for her.

    - Charlotte

  • March 25, 2011 4:27 a.m.

    My husband of 42 yrs. has dementia caused by a brain bleed a year ago. He has not recognized me as his wife, and I can deal with that. The problem is he gets depressed and upset because his wife is missing and he can't find her and doesn't understand why she is gone. Diversion does not work. He asks for her and is sad. Have tried antidepressants and helps some, but still remembers and asks for answers.

    - mary

  • March 23, 2011 2:00 p.m.

    allan: Went on alzheimerspouse.com. Lots of info plus heartbreaking stories. I am amazed at how long some patients linger in the late stages. My husband's sister has been in a catatonic state for three years. Others deteriorate very rapidly. Right now I treasure each day as if it were our last. Gone are our in-depth conversations on world events, family, etc. Doesn't even ask how much money is in the checking account or if there is gas in the car. Once in a while he will ask how the money gets into the checking account. I explain but he still doesn't understand.

    - shirley

  • March 21, 2011 4:32 p.m.

    My wife has many of the same characteristics as your husband. I call this our 'new normal' and each day I find myself saying to myself or someone else, "It is what it is." Try hard to preserve that 'me time,' try hard to maintain that patience, and take things one day at a time. Sites like this one and one specifically geared to spouses ... www.thealzheimerspouse.com ... help to keep me sane. So does attending a weekly support group just for spouses at the Long Island Alzheimer's Foundation. And so does maintaining a journal. Find out what works for you ... and just keep on keeping on!

    - Allan

  • March 20, 2011 7:21 p.m.

    Allan: Thank you so much for your tips. According to the websites you recommended my husband has symptoms from 4 different stages with intermittent bouts of very lucid thinking. Just when I think he is doing so well, his memory goes into reverse. We have been seeing just our internist who prescribed the usual meds that hubby discontinued after several months because of side effects of nightmares and insommnia. To be honest, I don't think they helped. I try to fix nutritious meals but he has decided to eat little meat but lots of sweets. Patience is the key. Hopefully there will be days that are easy. I continue to enjoy my "me" time.

    - Shirley

  • March 20, 2011 7:48 a.m.

    Shirley, many reputable websites ... Mayo Clinic, Johns Hopkins, NIH, The Alzheimer's Association, etc. ... present symptoms that frequently appear during various stages of AD. Most sites report AD as having either 3 stages ... early, moderate, and severe ... or 7 stages, basically breaking down 2 stages into 2 substages and one into 3 substages. Regardless, such sites will allow you to see common symptoms in different phases. Also, your neurologist or geriatric psychiatrist ... IF truly familiar with AD ... can tell you approximately where your spouse is functioning. Three caveats to remember, though: 1. Not every person with AD will display all the symptoms in any given stage. 2. Each person with AD will progress through stages differently, and 3. AD is not always a direct linear progression, meaning that some people with Alzheimer's will manifest symptoms often associated with different stages on any given day. The overall caveat is, "If you know one person with Alzehiemer's, then you know one person with Alzheimer's."

    - Allan

  • March 18, 2011 2:12 p.m.

    I read all of your blogs and you speak of "stages". How do I know if my husband has crossed into the moderate stage of ALZ?

    - shirley

  • March 18, 2011 10:18 a.m.

    Susan: At times my husband doesn't recognize me and it is so painful but I just keep going because I know I am familiar to him and hope that he may know who I am sometimes.

    - shirley

  • March 17, 2011 10:09 p.m.

    how do you handle your husband not reconizing you?

    - susan

  • March 17, 2011 6:44 p.m.

    I couldn't agree more with Allen about the importance of having 'me time.' Just an hour or two a day to yourself renews and refreshes. I come back from those breaks a better caregiver. I learn a lot from all of you. Keep posting. God Bless all you caregivers and the ones you care for.

    - No name given

  • March 16, 2011 8:51 p.m.

    I've looked at your site several times, always thinking I was not ready for that or didn't have time. I have just read about Blessed Wayne and his lucky Ann. I am there now with my husband of 42 years, Ron. We started our journey in Oct. 2001, yes 2001. I am learning that patience this early 2011 as we progress. God Bless

    - Dolly

  • March 16, 2011 4:32 p.m.

    Thank you so much for posting that story. My dad is in early stages of this as well and this has helped me learn how to deal with things a little better. Once again thanks.

    - Terri

  • March 16, 2011 3:16 p.m.

    My wife was addmitted to the hospital,I was asked, if she went flat line did I want ever thing possible done.Having her Advance Directive and power of Attorneyand having discussed it with her when still understood I said, NO, and placed a DO NOT RESUSCITATE (DNR) order. When it was clear that I would not be able to care for her at home she went to a care facility. She was not getting better, I was given the option to reture to the hospital. I was leaning that way, her primary Physican, was aware of the situation. He counseled me about the possible outcomes. I chose to remain in the facility and have comfort Care provided. This would keep her comfortable and pain free as possible, which it did.This allowed her pass on Comfortably, Peacefully and with Dignity.These decisions were difficult, heart breaking and gut wrenching.

    - Wayne

  • March 15, 2011 11:58 a.m.

    Thanks to all of you for helping me. The anger and resentment is making me very depressed and angry. Not towards my mother but towards evryone else. I am so angry with my sister that I have to beg her to give me a break..to spend a couple of hours with my boyfriend. Who is getting very resentful because we do not spend anytime together. I am angry at my father because he will not adapt to my mothers needs. I am trying everyday

    - Laura

  • March 14, 2011 7:47 p.m.

    According to the Bible, the only way to acquire patience is through trials and tribulations. So I stopped praying for patience and prayed for the ability to show love and enjoy life even in the midst of the storm. The emotions one feels are true and real for that person. Each person has to decide how to handle those emotions. My friend was telling me how she "played along" One day her dad was seeing things and said that the horses were not in the west pasture. She answered it was okay because she put them in the north pasture. Her dad said Why in the world would you put them there...they belong in the east pasture. HaHaHa

    - Meggie

  • March 14, 2011 8:16 a.m.

    Joan ... please don't feel guilty about any of your emotions. And please don't feel a need to apologize for occasionally feeling angry or resentful. We spouse caregivers all seem to go through various emotions at various times. What I find essential to my well being, though, is protecting that "me time" each day ... time just for myself, even if only an hour or two. With my wife entering moderate stage AD, I want to be with her as much as possible each day. That is my choice. HOWEVER, I have also discovered that I must also protect some 'me time' just for myself each and every day. When I allowed that 'me time' to disappear for a few months, I found myself becoming very depressed. So definitely do try hard to hold onto those outside interests and activities. It will make you a mentally and emotionally healthier caregiver ... a 'win-win' for both your husband and yourself!

    - Allan

  • March 14, 2011 1:14 a.m.

    Ive been a part time caregiver for my mother for over five years now. And when I say part time I mean that part of the week overnight 4 days Yet at times, I haven't left for a period of two weeks. I have my own family that I feel as though I rarely see, a son that just turned 18. Things become extremely stressful at times, and you feel as though you have lost who you are. In all that being said, this is a time that I have dedicated to her, to try and fulfill her with happiness. I can make her laugh, til of course she pees her pants, but she is laughing. I do her hair, put alittle lip gloss on her, and she heads off to the the bathroom mirror where her imaginary friends are. She makes plans with them, and tells herself she looks beautiful. Those are the days that make it worth it. Ive lost 30 pounds and try really hard to maintain my own health, it is very hard. Recently had problems with my heart due to stress. So ladies who are caring for your loved one, please take time out, go tan, or have a drink with the girls, please don't ever forget that you need time too.

    - Kim

  • March 13, 2011 11:55 p.m.

    I've been a caregiver for the past 10 years - first for my mother (8 yrs) and for the past 2 for my dad. I learned to play along with mother and it was much easier on all of us. There were still times when she pushed the wrong button and I would lose patience but for the most part after learning how to play the game things were much easier. It's a different story with my dad, I think I'm still trying to accept what I already know - he's not coming back either. He has hallucinations and thinks he is not at home but at another house that is "just like his". In his mind, people are in and out of the house all day and night - I argue and he tells me I think he's a liar. I'm often ashamed of how I handle situations and I think I'm taking the frustration of being the lone caregiver who has a sister who I have begged to give me a break a couple of days a month out on him. Not fair to the sweetest man I've ever known. I don't know how much longer I can keep him at home. I'm starting to realize that at the pace my health has declined the past 5 years, he just may out live me. Thanks for the reminder to let it be and play along - I needed to be reminded of that. My mom and dad were married for 67 years and I think he lost most of his reason for being the day she died.

    - Jane

  • March 13, 2011 12:19 a.m.

    I am starting to "play along" with my father's stories. My brother is having a more challenging time. It is hard most days and I do look forward to my dad going to bed. That way I don't have to deal with him anymore. I still can't see the reasoning on why my dad is still here. I don't like who I see. Acquiring patience? What I have acquired is frustration,tiredness, and anger. Friends who have taken care of their parents say that I'm okay. They went through the same gamut of emotions. I can only hope that I do not see my father reach the severe stage. If he does, I'll have to cope with it. He does miss my mother very much. That's the one thing he can never forget or let go.

    - Cindy

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