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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • April 5, 2011

    Writing helps dementia caregivers share courage, focus

    By Angela Lunde

50 comments posted

Alzheimer's Caregiving

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I'm mulling over the comments many of you have provided and reflecting on the impact that Tom and Julie (my last blog), Duane and Betty, Roy and Marty, Mel and Linda, Mike and Gail, Terri, Susan, Bernie and so many others have had on me over the years.

I realize, as I know most of you do as well, that we cope with a disease like Alzheimer's not so much by what modern medicine can give us, but by what we give and receive from one another. This blog is a vehicle for each of us to give and receive.

I've been reading another blog recently by a woman whose husband has Lewy body dementia. Her eloquent writing portrays an authentic candor that most of us can appreciate. She's from Minneapolis and goes by the name IslandGirl. In one blog posting, she wrote about courage. Her beautifully crafted words are worth repeating:

"Courage is going forward into a place where you cannot see the destination, putting one foot in front of the other while pulling a 1400 pound sled. Isn't that what we do daily with our loved ones? We don't know what the day will be like when we rise in the morning. We've lost our own futures — if that isn't a 1,400 pound sled we're pulling, I don't know what is. And yet, we do it. One step at a time, one foot in front of the other. We whine a little bit (or a lot) along the way. We seek companionship from others who know our plight. But we get out of bed, and sometimes, that is the biggest act of courage for a caregiver.

"And having others to help you pull that sled? That's God's gift."

She also writes about how her blog has helped her:

"These blogs have been my way of thinking through what is going on. They help me focus so I know what to ask for in strength and courage and wisdom. Some would say it's prayer, some would say it's meditation, some would say it's just the brain sorting things out. The odd thing is, I've never been a person to journal. Why is this so much easier?

"One thing that is clear though. Whatever you call this, and I'm calling it prayer on the keyboard, the answers come. They change sometimes from day to day, hour to hour, but the answers do come. One just has to sit still and listen for them."

Hopefully, many of you find healing as well by contributing your words to this blog.

To visit IslandGirl's blog go to: http://islandswamp.blogspot.com/

50 comments posted

blog index

  • May 6, 2013 11:55 p.m.

    I watch both maternal grandparents struggle with dementia/Alzheimer's! My stepfather died w/in a month of healthy living last march 2012! My mother is already in stages of dementia & on strongest meds for a few years! I love her dearly but fear for myself how fast this disease takes over your life! Is there a cure that I can even hope for in my life or my children's?

    - Gaylynn

  • September 24, 2012 1:13 p.m.

    My name is Jan and I really need this blog support right now. That's a good first step right, recognizing that I need others to better understand this disease. My epiphany today was that, omg, I am thinking of myself as her housemate (which was the original agreement) and she thinks of me as someone who eats the groceries, takes too long to go shopping and uses too much water to brush teeth, take a shower or do the dishes. Things have really deteriorated fast - it has been 10 months since she invited to stay with her because she really did not like living alone. I had on rose-colored glasses and saw it as God's grace that I could help her out to somehow repay her for all her help to my family. Now I just want to curl up on my bed, or run away home..........But today is a new beginning - I will look for some local agency and start journaling again. and I will look for information to help me understand her dementia and the best way to react to her mean crabby behaviors.

    - No name given

  • May 20, 2012 5:50 p.m.

    I find writing the best form of therapy in the world, and as a person with dementia, use my blog http://kateswaffer.com as my memory bank. It has opened up a vibrant channel of communication and memories with my family and friends, and offered support through the global dementia community. Thank you.

    - Kate Swaffer

  • March 3, 2012 7:20 p.m.

    My previous post was incorrect. I visited my mom 4 times in 8 days. I said 12 days. Feeling like I want to visit because I go by the building often. I would go there every day but until she has stopped being upset about being there I feel it is best to visit less often. What does anyone else think about visitation in the early time after admission to a facility?

    - Carol

  • March 3, 2012 1:20 p.m.

    My mother entered a Memory Care Unit 10 days ago. I have visited 4 times within 12 days. We did not visit the first 48 hours per staff request to let her "settle in" I live very close and only work part time so i could go every day. Her husband, my step-father goes every other day. I am struggling with how often to visit her. She wants to leave with me and keeps asking why she is there and how long she has to stay. We don't know what to say to her when she talkes about those things. The staff tells us she is making a good adjustment. It is fortunate that she is able to express her feelings to me when I visit. I don't want to make things harder for her by visiting too much. How do I decide an appropriate visitation plan?

    - Carol

  • September 10, 2011 8:13 p.m.

    I write a blog about my husbands Alzheimer's as well. It is called "Living in the shadow of Alzheimer's". It is really my only way of dealing with it. I know how islandgirl feels. Blogs are a great outlet for the thinks we feel. Stop by and take a look at www.sherizeee.blogspot.com

    - Sheri

  • July 25, 2011 1:19 p.m.

    thank you island girl. it kinda eases the guilt when you read others feel the same way or have similiar emotions about being a caregiver to a loved one with alzheimers. how do you get others to help pull the sled thru the snow? They seem to be in denial. our family knows i need help with mom. one family member helps out one day a week. where are her church friends? our own family? My prayer for myself is not becoming bitter. How can i prevent that?

    - ritzbah

  • May 3, 2011 11:11 a.m.

    I know for sure that my husband's early onset alzheimer's is the result of chemo therapy he received after discovering colon cancer in 2000. Rather than disappearing it compounded in the following years and is slow progressing. Has anyone had this experience after receiving 5FU and Leukovorin?

    - Karen

  • May 1, 2011 12:25 p.m.

    I have been following this blog for some months now, and really find it helpful. I have been my husband's caregiver for about 7 years now, since he was first diagnosed with Alzheimer's-type dementia. (There are still divergent opinions on this.) Having read IslandGirl's blog (which I found very moving), I decided to start a blog myself. I have never blogged before, but really feel this will be a useful tool for me. I think my husband is going through another period of deterioration, and it is signaling more changes for us. We looked after my mother-in-law for many years as she journeyed through dementia, and this is what my husband sees as his future.

    - Sue

  • April 23, 2011 5:03 p.m.

    How do you distinguish between it being him or the disease? He was so much like this before he was diagnosed but now so much worse. Sometimes I just don't think I can do this anymore. I do not feel love anymore, only anguish and sadness that our lives have come to this.

    - Marilyn

  • April 21, 2011 4:17 p.m.

    I have been a caregiver for four and a half years. My mother-in-law was once a great mother-in-law but now she is stubborn, argumentative and calls me a b@#$% on a regular basis. She sees things that make her fearful in spite of medication and longs for her mother and siblings. I am on antidepressants and my once happy marriage is on the brink of divorce because of my husband's lack of understanding for his own mother. I am trapped in our family room/kitchen area. My husband and I cannot leave the house together. I cannot hold a job outside the home. My mother-in-law is 97 and asks me what has happened to her. She says that this is no way to live and asks me what she is still doing here. Other than caring for her kindly, making sure that she has human touch, being respectful, and speaking with her even when she doesn't make sense, I feel that the best thing that I can do for her is to pray that she finds peace in death. There you have it. The unvarnished truth. Although I am loving and kind to her I HAAATE having to do this! One thing that I do for her that she really likes is based on 'The Notebook'. I sit by her bed at night until she falls asleep and tell her the story of her life. She especially likes the story of herself as a young girl. She is amazed and asks me how I know all this. I'm so glad that I was listening and making mental notes when she was still lucid and was telling me her history. Now, back to care giving and waiting for it to end!

    - deborah

  • April 21, 2011 3:38 p.m.

    I read over my prior blog and it seemed almost selfish. I sure don' mean to be. The little weekend trip did a world of good for myself, but not so much for my husband. He thought that I was not coming back and did not remember the phone call from me. I noticed a very hugh change in him in the last two weeks. He is not remembering almost everything in the past, he fibs to me now,. Won't take a shower. He has been telling me he has been brushing his teeth, he does dress himself, I shave him, but give him the privacy he wants in the bathroom. I checked his toothbrush to see if it was wet yesterday after he said he brushed them, and not wet at all. I looked at his teeth and he hasn't been brushing them all along. He said he switched his unterware, but I found he has been taking out clean ones and putting them in the wash. Just saying, I guess, that I have my head in the sand. I did not realize just how bad things really are. Now I know and can help him more, although it is very hard to get him to do things for me. He puts up quite a front when people come,. One may think that he is ok and just a bit distant, but when they leave, he tells me he did not understand nor can remember a thing they said, In two hours, he doesn't remember they have been there and will stay in beda whole day because it tired him out trying to pretend there is nothing wrong. He is aware alot that he can't remember and it upsets him greatly. He does not enjoy anything in his life now.dwMd

    - donna

  • April 21, 2011 10:05 a.m.

    to islandgirl....your words have touched me so and launched me to respond and thank you, and all the others, who have shared their thoughts and feelings about the important and daunting task of caregiving. My 59 year old husband has been diagnosed with Progressive Super Nuclear Palsy. Originally misdiagnosed as Parkinsons but when PSP finally chosen some relief in that the dementia issues are now explainable. After over 34 years together and many "battles" over the years this one is by far our toughest! He battles what his brain is doing or not doing for him...and I battle everything else!! plus I grieve for the "us" that isn't anymore and for the loneliness linked w/ responsibilty that is my life these days! The lack of predictabilty and normalcy in every day stuff adds to our struggles. Family and friends try to be helpful and respite workers provide guilt free relief but this is the most difficult thing I have ever had to do in my life. I am on my knees praying for wisdom,patience and love.

    - goldcountrycaregiver

  • April 21, 2011 2:41 a.m.

    To Louise's entry on April 9: Dear Louise, it's very hard to deal with an adult who has AD, but try to remember -- your mother-in-law cannot help her reactions (like being unthankful toward visitors, as you had mentioned). Try to accept her for who she is now and give her love and understanding. She'll remember some things, but not all things. That's the nature of this disease. It makes the patients very unpredictable, and sometimes very unlikeable. I've been taking care of my mother who has had AD for the past 10 years. After being mad for many years, I finally realized there is no room for being mad. Just understanding and love and a lot of patience - that's what we can offer to one who is suffering from this life and mind-altering disease. Mom and I are fine together - and we have peaceful and happy days together. Best wishes. Kirsten

    - Kirsten

  • April 17, 2011 9:27 a.m.

    My wife (age 65) is rapidly showing physical and mental decline that parallels AD. The cause seems to be the intensive chemo she received to control her ALL (following a bout with CML). In two months she has gone from a fully functioning person to one who can barely get around, and is increasingly more confused, with almost no short term memory. Extensive medical testing can't find a reason, although hypothyroidism led to a week long hospital stay in early March. She is losing her appetite, and sleeps excesssively. Karen, in an April blog mentions chemo, and this seems the only reason for this sudden sharp decline. I welcome any input from those going through this life altering change, for both of us. Dave

    - Dave

  • April 13, 2011 8:30 p.m.

    Heres a different switch on writing. My husband who has AD writes something almost every day and we keep track of his slide that way, and he can see it himself, being a Dr. he is interested in his own decline. It's very interesting and helps me understand him and the disease much better, too.

    - Rosemary

  • April 13, 2011 1:45 p.m.

    I am finally coming to grips with this disease. My husband's dementia is the result of chemo therapy he had in 2000 and I always thought it would get better but now I have to admit that it is getting much worse and I have to go on. Though slow progressing, it is nonetheless Alzheimer's. Has anyone else out there had this experience with chemo?

    - Karen

  • April 13, 2011 1:44 p.m.

    I am finally coming to grips with this disease. My husband's dementia is the result of chemo therapy he had in 2000 and I always thought it would get better but now I have to admit that it is getting much worse and I have to go on. Though slow progressing, it is nonetheless Alzheimer's. Has anyone else out there had this experience with chemo?

    - Karen

  • April 12, 2011 8:32 p.m.

    I was quietly (I thought) sobbing in the hospitsl waiting rooom after having been told that my wonderful husband of 33 years was blind after an unsuccessful attempt to repair his detached retina. The devastating news came two years after he lost total sight in his right eye from a bleed in the retina. Disbelief! My beloved husband not being able to see? I then heard a voice say "don't cry, everything will be okay"! I looked up to see a young 20ish Hispanic man trying to calm my fears! He was dressed in khaki shorts, a t-shirt and sandals. A small wooden cross hung from a silver chain around his neck but when I reached to touch his cross he pulled away. After responding to his question of "what happened" he chided me my saying "nobody trusts Jesus anymore". He continually paced back and forth asking more questions about my husband and myself. He told me his name was Cesar and so was his father's and that his father was a minister at a Pentacostal church in the next town. I said "maybe you're a Guardian Angel sent from Heaven"? He smiled and said that he was leaving to go ask his father to pray for us. A moment later I looked for him in the hallway and he was gone! I asked the nurse where the young man went. She hadn't seen anyone! It was at that moment I turned my husband over to God's loving care. I have renewed my faith and my strength to continue on this incredible journey caring for John with his vascular dementia and b

    - Pat

  • April 12, 2011 12:23 p.m.

    This is for "Phoebe" I understand how you feel with out any smiles and expression. I got a small dog,lap dog that was house broke and he got along with adults very well. My husband of 56 years has Parkinson disease and he had lost his smile for anything. Well, since we have had the dog he reachs for him to pet and the dog is responding back by setting beside him and I will put the dog in his lap for short periods. I have noticed that my husband is smiling a little and when he even looks at him in the floor some time there is that little smile again. The therapist said it is very good for a person ike this to have a small animal they can touch and hold. It has even made me a happier person. When I brush the dog or do anything for him and my husband can see us he has been showing me a smile which just lights up my heart to see him smile again at just a small thing. You might want to try such a thing if you yourself can take care of a small animal, cat or dog.

    - Julia

  • April 12, 2011 10:52 a.m.

    I love this. It is nice to have a place to go to view and review, things around me, My Mom in law moved in with my husband and I in Feb. We never realized how bad her dementia was. I have to constantly give my self grace because I get so frustrated withe the continual repetion. I laugh because on most days she doesn't really know who I am. On those days she is very kind and considerate, trying to please..the other days are not as good she hasn't really liked me since I married her son some 40+ years ago. But I so want her days to be easy she is over 95+

    - Oh My

  • April 9, 2011 2:06 p.m.

    I have been in this "netherworld" for 30 years now. First with my husband's brain injury (with symptoms mimicking dementia), and then a dx of alzheimers in 2004. His behavior is erratic with much acting out. We're married 46 years and I struggle to remember peace in our lives.

    - Jean

  • April 9, 2011 11:48 a.m.

    I miss the laughter, I miss having anyone who can joke and bring on sidesplitting therapeutic laughter. I am sole caregiver for my husband of 61 years, marriage always had big highs and low lows. I now suspect that he always had mental problems which no one recognized and we just thought he was moody. Now he is mostly silent which feels like the bad old days so it is more difficult to dismiss as only the disease. Have been walking in these moccassins for over five years. When I could leave for weekends etc. it was much easier to cope. Now I do not leave for more than a few minutes. I have not posted comments before because I just do not have that sweet feeling that most of you feel. Sorry if this is a downer.

    - Phoebe

  • April 9, 2011 7:26 a.m.

    I just had a window opened... Since caring for my mom and mom in law with dementia I have not written because every time I try it makes me so darn sad! Then I come across this... it is beautiful to read.... the words have touched my soul! Maybe just maybe in my reading it i will be find the courage to write...

    - Vivian

  • April 8, 2011 9:15 p.m.

    Well, I had a really good CRY last night after watching the Notebook with James Garner and Gena Rowlands! Love lost, love found, and love lost again because of dementia! The song "I'll be Seeing You" is a heartbreaker! As I sit now in the chair near my wonderful husband as he sleeps, I am able to watch TV and use my notepad computer that our wonderful kids gave me for Christmas. This is how I stay connected to friends and family because each day with a husband who has vascular dementia is so unpredictable that phone conversations are not successful. When I read others' blogs, I am beginning to realize that those affected with AD and other dementias and who are fully sighted may provide more difficulty caring for them. As I mentioned in my April 7 blog, John has been totally blind for the last 18 mos as well. He needs to be guided in everything and watched every moment. When his wonderful caregiver goes home, we have our own "happy hour" mine with wine, his with non-alcoholic beer! I try to create some semblance of "normal" for me!! I tell him about our family, our life together and I talk to him as if nothing is wrong. He only hears supportive, loving words from our mouths.

    - Pat

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