Alzheimer's disease

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• December 11, 2011 7:09 a.m.

  Thank you for this post, it is really hard to remember to care for yourself. My husband was diagnosed at 64 he is 68 now. You can peak at my journey at my blog. "Living in the shadows of Alzheimer's". At www.sherizeee.blogspot.com. Thank you for all your help and support.

  - Sheri

• September 18, 2011 5:49 p.m.

  I have been ruminating about this blog for some time now. For me, it is hard to care less but WHEN I "carry" less by reaching out to others for support or help,or by simply accepting the reality of today, the losses seem easier to shoulder.

  - Rosalie

• September 7, 2011 4:51 a.m.

  As a caregiver and an intensive care nurse, I can see that caring less may be the acceptance of "meeting them where they are". I have found myself doing this in the last year and seem to be less upset with behaviors, and the possibility that I may be responsible for some of them. By viewing our loved one as who they are at that moment, not who they "used" to be, I release myself to be in the moment, no matter what that moment may be. I even call her Betty Mae, or Itty Bitty. Her name is Betty Maxine. An aunt asked me why I called her Betty Mae. I didn't know why until years later. I realized that Betty Mae is my "patient", a person in my care and Betty Maxine is my mom. Or WAS my mom. It's easier for me that way. Good luck to all, take care of yourself.

  - laura

• August 24, 2011 6:34 a.m.

  Regarding caring less...Since I learned not to argue with, personalize, debate things my mom says, I am able to just be with and love her for who she is NOW. Even though I miss her old personality we still enjoy the shore, walking on the beach, eating together and talking. Although I love her very much I placed her in an assisted living facility where she is cared for compassionately and can talk to others. I feel bad leaving her but I go 3x per week for a minimum of 3 hours each time even though it is an hour from my home and work. I have 3 siblings who seldom visit her but make snide remarks about her care. Dementia can consume both the sufferer and caregiver as you well know. I am proud of how I care for my mom but have learned to care less about her delusions, paranoia, accusations of people stealing. If I don't care for and preserve my self I can't care for her.

  - Colette

• August 21, 2011 2:41 p.m.

  To Sandi - I've learned this lesson also and life is so much better when I can step away from arguing and just remember "it will pass". Recently my 81 year old husband has been entering "another world" in the night - I hear him chattering away to someone he thinks is in his room, cracking jokes, laughing, - eventually I make some him some ovaltine and join him in his story until his confusion leaves and he remembers where he is and who I am.This "delusion" just began - it is not unpleasant - and after 58 years I take nothing personally, pray all the time, and try hard to make "lemonade." It sure helps to check out this forum and ask God to help us all as we are part of the long journey into the twilight zone.

  - Ginny

• August 20, 2011 9:50 p.m.

  This message is to not over react about the little stuff which is kind of funny because that is exactly what some people did! My husband got upset today because he couldn't get under the covers last night and didn't want to ask me to help. He accused me of "doing something" to the bed. He was quite upset about it. I just told him that it was the same as before and walk away. This evening, he was ready for me to help him get into bed again. I have also been helping him look for a truck. I don't plan to actually buy one. But, what does it hurt to look compared to trying to reason with an unreasonable person about driving. He talks about buying an XKE Jaguar like he had years ago. I say those are nice cars. It is what it is, and we have happier times together. It stinks enough that the most important person in the world to me has this awful disease. I don't have to make it any worse by caring about every little bump in the road.

  - Sandi

• August 20, 2011 8:40 a.m.

  I've just read many of the comments - they are all helpful. This week my 81 year old husband has declined more - rambling all night long in a confused state of mind - this means less sleep for me than ever, holding my tongue, hoping he doesn't fall, and realizing the worst may be yet to come as the years roll by. But recently, my loneliness was unexpectedly relieved as some family members assisted me in yard work. Perhaps this poem by Helen Steiner Rice will raise the spirits of other caregivers like me: "Thank you, God, for little things that often come our way - the things we take for granted but don't mention when we pray. The unexpected courtesy - the thoughtful kindly deed - A hand reached out to help us in the time of sudden need - Oh make us more aware, dear God, of little daily graces - that come to us with "sweet surprise" from never dreamed of places!" May we all receive some "sweet surprises" today! It sometimes seems that others avoid us Alzheimer caregivers - our caregiving is 24/7 and oh, how we appreciate help and understanding.

  - Ginny

• August 17, 2011 4:46 p.m.

  I need some input on how much one should sacrifice their own health, marriage etc for a parent with alzheimers when there is plenty of money for her care. My husband doesn't want all the money to go to his Mom's care- mostly he wants what is best for her because he loves her, but he also wants some of her vast money to be left to the family in "the end" I say spend the money on her care now for her sake as well as ours. the obssesion with her will destroy us all before "the end" I love her and do expect to be supportive, but my husband does not see the danger in being obssesed with only his mother (and, her money) Help!!!!!!!!!!!

  - Linda

• August 11, 2011 3:48 p.m.

  Hi Angela, This is a great posting. I would only change the language a bit. I think it is possible to still care and to care deeply, but to let go of outcomes - of expectations that we have that life has to or will be a certain way - that our loved ones have to or will be a certain way - that this disease is going to progress in a certain way. It is possible to care and let go of these outcomes at the same time.

  - Tom

• August 11, 2011 5:53 a.m.

  Thank you Doug for your posted comments. I am consumed with guilt at times that I had to place my husband(aged 69 years) into residential care; he was diagnosed as a mental health patient due to frontal lobe dementia. I cared for him at home for some time but I know , at times, I would have found it difficult to conjure up any loving feelings for him; all I could think about was getting through each day. His physical needs are now met and in the hours I spend with him each day we have rekindled our love and I tell myself that we are closer than we have been for years; the loss of understanding and reasoning seems to have heightened the nonverbal empathy we have. MY caring role has changed in the way Doug states and I know this in my head but the guilt still remains. My psychiatrist asks me "what do I want to happen to lessen these feelings, live with him 24 hours each day and hate myself and him, as well as being at risk" and I have to honestly answer that I can do nothing better than to just love him dearly and ensure he gets the best possible care.

  - SANDRA

• August 8, 2011 3:41 a.m.

  I am the caregiver for both of my parents. My mother (age 92) has ongoing memory problems and my dad (age 96) does pretty well. He recently had a knee replacement and is walking again. I have two issues. 1) What is the value of having my mother tested for Alzheimer's? She already takes a lot of medication. I'm not sure that knowing why she has memory and other issues will help her. 2) While I think I'm coping well, my husband is experiencing frustration with the amount of time the care of my parents takes from our lives. We are both retired, and he wants to go places and do things, and we both feel constrained by their needs. They are living in senior housing, and many of their needs are taken care of. However, I feel like I have to monitor their care closely, primarily because my mother tries to manage and manipulate things. So what suggestions might you have for the spouse of a caregiver? I have not seen that addressed anywhere, but their needs are certainly important, too.

  - Lynn

• August 5, 2011 8:44 p.m.

  Marilyn, I put my husband in a adult care center with his dementia. He kept me up 24 hours a day,went outside and exposed himself. I had to keep my eyes on him every minute of the day. I could not even take a regular shower. He did things that could have blown our house up with the natural gas, one thing after another. To make a long story short, I am so beside myself even more now, as his children and even sister who I thought was my best of friend told me that I was selfish, a good wife would not put her husband in a place for others to take care of. I am considerig bringing him back home, as the stress is 50/50. Even the place that takes care of him lets him go off with anyone for the day, as long as they sign in, doesn't put the alarm on the door when he is there all the time. I am just as stressed worring about him at the facility. If these people only knew that there are alot of symphtoms of dementia, they can make a person who see's them only hours out of a day to apear to be just fine, they aren't there when he is at his worst to where he can harm himself and possibly the care giver. The only thing I can do is what I think is best for him and myself. If I were to have a stroke at which I feel I will, my husband would not find one family member who would take him in, not even his children. They might last two days giving it a 24 hour period. I really feel people are not educated of the sympthoms, stages and types of this desease.

  - donna

• August 3, 2011 4:08 p.m.

  My mother-in-law's Alzheimer's progressed over a period of 20 years. It got to the point that she was in a life-threatening situation: Wouldn't give up driving even though she was lost on the other side of the block where she lived for almost 70 years; went out walking in a light jacket when the temps were -20 degrees; became lost between the laundry room and her apt. My husband was the one of the 5 children who took care of his mother. One brother, who came to visit once a year for a week, tried to micro-manage and tell my husband what to do. Another brother told my husband that if he put their mother in a nursing home, it would kill her. People believed her delusions that we stole from her and some cousins wouldn't even talk to us. At times, I was afraid my husband was going to have a heart attack or stroke from the stress and no one seem to care. It's been 3 years that Mom has been in a nursing home. She is clean, well cared for, has company, and most of all is safe. We can certainly relate to "care less and love more!"

  - Marilyn

• August 1, 2011 9:29 p.m.

  I also read that article regarding loving and caring, in fact I saved it. I apply it with my mother by loving and accepting her just the way she is (dementia)and not caring that she is picky about her clothes or whether she is wrong about what time her appt. is, etc. I try not to care so much that I have lost my best friend and love the person she is now, just the way she is

  - Linda

• August 1, 2011 10:43 a.m.

  In todays society cute pharses seem what we are looking for in this reality driven world. Unfortunately that doesn't work in the Alz world. We can't "Care Less" that's insulting as many have voiced. It's learning or developing survial skills that don't destroy us while trying with all our fiber and being to help our loved ones navigate this nightmare. We have learned from each other who travel this mine/mind field to try to survive. If we as caregivers could remove are nemsis "guilt" we could make the turns much easier. For me sleeping, eating right and trying to exercise (this journey has help me gain 40 unwanted lbs)are what saves my sanity .....and all are there own job in getting them into may day with working full time and caring for my husband who needs assitance at every turn. Life is not always fun or fair......but we alzheimer caregivers to have a deeper appreciation for life ...we do!

  - Terry C

• July 31, 2011 7:56 p.m.

  I have been adopting a similar approach lately in the care of my parents and feeling a little guilty even though I know it is necessary for my health. I have been asking myself if the situation is really something I can change. If not I have been working on changing my attitude towards the situation. For example I try to provide regular healthy meals for my parents. They never want to eat when I bring food even though it is consistent. Dad always says he is not hungry or just ate. Instead of leaving upset I just leave and I find later that the food is eaten. Care less, love more good advice!

  - Lori

• July 31, 2011 1:11 a.m.

  Urinary problems. See your doctor, preferable an Urologist. Wife had a major problem. I choose a patch, which is changed twice a week. Results is almost 100% effective; however, it is necessary to remind her to go to the bathroom. The patch leaves a residue which is hard to remove. Had to go to a Medical supply and buy special cleansing pads - yes I did try alternatives. Cost is $19.95 (+ tax) for a box of 10O - not covered by insurance. There is an ointment that can be applied daily. After using both, the patch is easier for me to use. Both are covered by our insurance. This solved a rather major problem for us. God bless us all.

  - Monroe

• July 30, 2011 8:07 p.m.

  My mother-in-law has been with us for going on three years. She is driving her son nuts, i am not that closed to her so it doesn't get on my nerves as much. The thing that does get on my last nerve is the lack of caring by his brothers and their wifes. This past week she has mess her pants three times. I hope this isn't a new trend and she gets some control. I wonder if she will keep doing this. She has been wetting herself for over a year now. I hope this messing herself stops quickly. I know one day she will probably be bedridden and then she won't have control at all. Oh good grief what to do.

  - Georgia

• July 30, 2011 12:42 p.m.

  Gary, you have said so eloquently about the love and care you have for your wife and that mirrors what I feel about my loving husband of 33 years. All things are possible with God. "Be joyful in hope, patient in affliction, faithful in prayer". Romans 12:12.

  - Pat

• July 29, 2011 11:36 p.m.

  The title of your article suggests that you agree that caring less will result in loving more. How simple that concept seems. I am the caregiver for my mom who has Alzheimers. I am also a health professional. As a health professional I often believed that I had the answer for both my patient and their family mbers. I did not as I never walked in their shoes or ones which were perhaps similar. The blogs I read were filled with love , compassion, fear, and frustration by husbands, wives, sons,and daughters who are caregivers for loved ones with dementia. As a result of our love each of us shared stories of our caring acts aimed at providing our loved one with a quality of life in which they may experience some degree of peace or even joy and be spared anxiety, agitation, fear, or unrest. We give to our loved one in hopes that they will have moments of peace or joy. To suggest that the concepts described in the magazine can be generalized to those of us who are caregivers is at best ludicrous and at worst disrespectful. My journey may be similar to yours as a fellow caregiver yet I cannot judge either your actions or decisions. I will marvel at the love you have to give as shown through your caring acts. I cannot judge or suggest that you love any differently. The love we have is the basis of our caring acts. To suggest that either love or caring can be modified for the benefit of both parties demonstrates a lack of understanding of the emotion of love and resultant caring acts.

  - Nancy

• July 29, 2011 11:14 a.m.

  In God's word the Holy Bible, we are told to love one another, now I love my husband and care how he looks etc and it makes me feel good inside that I can shave him, gives him his shower etc, this is an expression of love, as is all the other things, but saying I love you back to him is a good thing for us both. Does he know who I am, probably not just a woman who takes care of him. Guilty yes when he opens the blinds and lets the sun shine in when our air is on and the temps are in the hundreds then he cries and asks if he can still live here. I don't agree about they theory of love as without love I wouldn't be able to do what I do and they way that I do, love is caring.

  - Dorothy

• July 29, 2011 11:00 a.m.

  Last statement refers to writer of article not you the loving care takes of our family, spouses moms and dads. I think you u all as angels of life and well we can always buy more flowers.......

  - No name given

• July 29, 2011 10:30 a.m.

  Rene I am sorry I just don't want to be I do want to be happy sad loved ....actually I want what I know on some level I will never have again, my loving guy that I married 25 years ago this month. I fulfilled his bucket list last month with a hot air ballon ride, all bittersweet because he couldn't really understand it. And imagine the time we had getting him in the bucket. Last night an unknown neighbor from the next development over brought him home. I know all our stories are different and are feeling the same. Caregivers must love themselves as much as the people the love and care for. I will not care less or love less I will just remember when I took my vows 25 years ago I meant them then and I mean them now. But I think Larry said it best walk the walk before you talk the talk. Need to go we are pulling the plants not the weeds...............

  - annoyed

• July 29, 2011 8:46 a.m.

  Thank you all for your posts! When I read some of them I chuckle because it sounds like my Mom. Others that I read make me want to cry, but it's comforting to know that I'm not alone! Somedays when I think I am going to go crazy..she will do something that makes me and her laugh!! I love her...She's my Mom!!!

  - C

• July 29, 2011 8:29 a.m.

  dont be happy dont be sad just be

  - rene