Alzheimer's disease

Free

E-newsletter

Subscribe to Housecall

Our weekly general interest
e-newsletter keeps you up to date on a wide variety of health topics.

• March 1, 2011 1:02 p.m.

  I have been a secondary caregiver for my father (81) who has Parkinson's with Alzheimer's. My mother (81) lived with him and took care of his daily needs while I drive for them, take them to appts, for groceries, banking, social outings and the like. I do the same for my mother's sister (89). I also am a stay at home mom of four children (7,6,5,3). I have felt guilt over the time I have spent with my old people as it has taken away plenty of time that was intended to be used for playdates, laundry and preschool activities. At the same time I feel that I cannot devote enough time and at time feel I neglect the needs of my parents/aunt. Both my aunt and father are in care facilities now and I cannot believe the relief I feel that they are physically safe with trained caregivers. I watched my mother exhaust herself, worried over my aunt & father's welfare for so long. Now instead of emotional strain, I need more time to get my mother to both of them to visit. With young children, we often are sick or wish to travel. So I have guilt over leaving or not being able to drive for them. I have many siblings but not much help. This article reminded me that I don't control what needs to be done around me. But I do decide how much I can and cannot do. And I have to be ok with my limitations. I still wish for the book that tells me in 'this' situation, the reasonable response is 'this'. I guess it's up to me to decide & I just have to be sure & ok with my own

  - Lisa

• October 29, 2010 6:13 a.m.

  My mother suffers with Dementia and has done for three years. My brother is her carer and has done a wonderful job. I went to give him a break four months ago and never left. Between us we gave her the life all mothers deserve. Last week my brother and the rest of the family felt it best she go into a nursing home. I thought we could have managed her a bit longer before we had to do that option. She cries and asks me to take her home. I feel so guilty and struggle to control my emotions. I wish I could over rule them and take her back home but cant. I walk around the house that she walked around untill this week. This wonderful soft lady that I have know for 50 years. I feel like running and hiding but I could not leave her to be alone when I can offer her some love. In a way if she knew no one I would feel better. I dont know if I am sorry for me or for her even. My emotions are so mixed. I would lay with her and play nice soft music and she would sing along with me. Cuddle and comfort her as she cried because of the confusion in her mind. I am not religious but pray that my wonderful mother will die soon. Such a soft beautiful woman. I am so alone with my thoughts. I feel for anyone out there that is going through this.

  - michael

• August 25, 2010 2:28 p.m.

  This is the hardest thing I have ever done. The hardest challenge I've ever went through. I started out as the maid and 8 years later I'm the caregiver for my 87 year old friend. This rollercoaster of emotions of smiling even though that is the last thing I want to do, of staying calm when really I want to scream, of staying and taking care of her when sometimes I want to run away and hide. My own mother gave me a wonderful piece of advice to help me cope..."look at her as a CHILD in need"...that has helped. It doesn't always take away the frustrations when dealing with an alz person, but it helps. If anyone takes on this awesome responsiblity just know in the end I think God will thank us. We ARE doing a good thing.

  - Heidi

• July 26, 2010 10:52 p.m.

  I can honestly say that taking care of my mother with advanced ALZ is and probably always will be my greatest challenge. However, when the days get tough I remind myself to "just love her more" she might not remember what I say or who I am but she will always remember how I made her feel. The gifts she gives me ( to live in each day/moment, a simple smile,glimpse of her sense of humor,spontatneous hug) are far greater than any gift I could ever give her.

  - Beth

• July 16, 2010 11:33 a.m.

  As I am trying to make the decision to have my husband admitted to a nursing home these words have really helped me...it is time for me to let go...he needs more help than I can give to him alone. I will be there for him but I have realized I also need help...with him...Alzheimer's and blindness are a difficult combination and I know he will be well taken care of and I will be his forever advocate. Thank you for posting this as it has really helped me "let go" and ask for much needed help.

  - Mary Anne

• July 12, 2010 10:26 p.m.

  Okay I hope this will help someone out there in alzheimer's land. First let me start off my saying that I did not choose this role I was expected and groomed for it from a very young age. I was happy all my life that my Mother depended on me to care for her when she got old. There was one big detail that she left out ALZHEIMER'S. As this disease progressed I let go many times and I never once felt empowerment. Letting go made me feel angry, powerless, insufficient, and passionless. Well she finally got to the severe and final stage, and I finally let go for good. AD makes you let go you have no other choice. When that time comes you will accept it with open arms and have peace that it is the right thing to do. I have a confession I let go, but I didn't give up. Because I didn't give up I can now sit with my mom and converse (you heard me right converse) laugh, smile and yes eat with her. By the way she loves apple pie and taking rides. So go ahead let go, but don't ever throw the towel in there's light at the end you just have to follow it. Thank you Jesus for the miracle. AMEN

  - Jennie

• June 10, 2010 9:56 p.m.

  I'm in the middle of nowhere in Texas caring for my 92 year old Mother with Alzheimer's. It's frightening to have her wandering from the house at 5AM. What heartbreak this Alzheimer's! A friend reminded me when I have to repeat the same answer, to act as though it's the first time the question was asked and the first time I answered that same question......it works for me. This is certainly not the life I planned. I cared for my wonderful husband with Parkinson's for a number of years and now it's my Mother. I've taken a day off here and there but this is taxing and ask that each of you pray for me, please. Thanks!

  - Suzi

• June 10, 2010 10:58 a.m.

  After reading all the comments (15) I sure realise , that even though my situation is somewhat different, the emotions, etc. are the same. I am 72 and have a downsyndrome daughter who will soon be 45. She has always been with me. She was diagnosed 2 yrs. ago with hep.C., due to a blood transfusion in 1984. It remained "dormant" until 2005 and then she started complaining of being tired. She was a very active girl, and she was training to live on her own, but now she has gone from being an olympic swimmer/bowler, horse back rider, to a couch potato with very poor memory in 5 yrs. On top of that, for 22 months now, she has extreme pain after every bowel movement and the doctors have no idea why and I am now after a laprascopy to be done. This pain, sometimes she is screaming and so doubled over, and crying "help me, help me". She has been to hosp. by ambulance several times this year, to no avail. Yes, I am very stressed out , I cry alot, my family are no help and husband is dead. I have been on my own 30 yrs now. It is hard, and I thank God for His help, but we also have to help ourselves. I do get respite which has helped, but where does one go for just a few days. Yes, there is help out there, and we have to deal with our demise the best way we know how. Trust in the Lord and don't give up. Yes,one day at a time is sufficient. I know I have to do more for myself and now the better weather is here I will force myself to get out and use my camer

  - margaret

• June 9, 2010 8:57 p.m.

  And at the risk of beating a dead horse, other posted comments also indicate just how essential weekly support groups are so each of us dealing with our own particular 'house of cards' have a place to go to for help to accept the life that is waiting for us.

  - Allan

• June 8, 2010 2:18 p.m.

  I take care of my husband, 24/7 no help, no support groups. I am wondering how do I find time to go to a support group or take care of myself. I have to take him with me wherever I go.

  - Lou

• June 7, 2010 7:06 p.m.

  My husband who is significantly older also has dementia. Cardiac Arrest at home followed by several strokes, prior to dementia, has not helped matters. I have been on the rollercoaster of emotions...mad , sad, hopeless,feeling alone........everything. Yet each day I thank the Lord that he is still with us at least physically. His mind is as sharp as a tack from 40 years ago, yet he can't remember what happened yesterday. We have an 11 year old son together and he has been my rock and salvation. We have learned to accept the changes that have occured, and make the most of each day. It has been 5 years already, yet we have accomplished so much in that time, even tho' each day brings new challenges. I , too, work a full time job ( 12 hr. swing ) take care of all the house, financial, and necessary things to survive. All in all I am at peace with all of this, He is not the man I married, but I would never think of leaving him, and who knows what the future may bring. God seems to be testing my abilities as a person, and I have learned to face each day with a open mind, knowing that all to well, it could have been me who is being cared for. Afterall, I married him to stay with him, walking out in times like this has never been an option. Finding peace in a difficult time means letting go, one day at a time is my motto, because who knows whether tomorrow will ever come.

  - Tina

• June 6, 2010 9:54 a.m.

  Caregiver X 2. My Mom is 90, and has mild, stroke caused dementia. She has falled twice, and broke her wrist and pelvis, and recovered and is back home. I am the only child. My husband has an aortic aneurysm, nearing size to be operated on at Mayo. He will have a long recovery, in addition, his knees need continued treatment for him to be pain free. He kind of resents that Mom lives next door and that we are so tied down. He wants to go places and do things, but we can't, since she is not able to travel. We have a split level home duplex and 17 stairs up and down. Moved before all of this came about. I want to move again, but my husband says no, he will not move my Mom. So it goes on. We live in tiny town with no support groups. Thanks for letting me air.

  - Alice

• June 5, 2010 9:21 a.m.

  I am an 81 yr old caring for my 82 yr old husband who is slowly declining mentally, emotionally and physically. It has been so helpful to read the other comments, as they have been mirroring our situation exactly. I do not have a support group yet, as it is impossible to go anywhere without him and he does not accept the idea of having someone with him except me. When stimulated he can act quite normal so only those who are experiencing this life understand. Three other men in the family are showing the same disease, one a brother and two cousins. I have had to take over all the things he once handled, plus all the things of daily living here in the house. It is so sad, but only recently I have learned about acceptance, and you are right, it is helpful as it has released me from the anger I would feel at the injustices (!!!) of life. Life just is and find ways to cope. Sleeping sometimes is a problem, as he frequently has nightmares and yells out in his sleep, waking me but not himself. Today we are going on an outing to our daughter's cabin, have been planning it for a couple of months, yet he got up and didn't remember it, and then asked what his sister's last name is. After getting him oriented I just murmured, "I accept, I accept". I would like to sell our home and move into an apartment but the market is too poor right now, and we do love living here. Hope I outlive him as he can't be alone and our children (3) all have such busy lives .

  - Helen

• June 4, 2010 4:55 p.m.

  I am an 80-year old caregiver for my husband who is 83. Fortunately, I am in fairly good health but I have had to assume so much that he helped with before He does not know who I am most of the time, does not recognize our daughter or granddaughter. He has maintained his sense of humor which helps but two serious strokes brought on the serious dementia and affected his hearing, his speech and his walking. Communication is so difficult (I keep a notepad handy). I am constantly told to take care of myself. I have no help and am finding that just hiring a sitter occasionally is very expensive. Our income consists of two SSA checks and the savings is rapidly dwindling. My doctor worries that I have lost so much weight and is sure my health will deteriorate - and my husband, otherwise very strong and healthy, will probably outlive me and who will give him the love and attention that he deserves then?

  - Wanda

• June 4, 2010 10:17 a.m.

  Just like all of you I'm caring for someone who, when he wakes up is cloudy about what happened or who he talked to yesterday. No matter how many times I remind him or tell him we have already done that, I have to remind myself this disease is not who I care for, but something he has that we deal with. I think Allen sums it up very well for me. "This is what it is" (as I loosen my grip on the steering wheel) even though it is breaking my heart, I have to survive for him.

  - jewels

• June 4, 2010 2:12 a.m.

  My Mom was along for many years after my Dad died which was stressful for her and since I was the closest to her, I realized how lonely she was becoming. When she had to watch her only sister deteriorate in a nursing home, I made certain promises to her, 1) I would never put her in a nursing home, 2) If she started to 'lose it', I would never let her embarrass herself in front of friends/family 3) I would be strong for her in all things that came along. I had 2 older brothers, living elsewhere, far away, who knew little of my Mom and her life, concentrating on their own lives and families. When Mom needed me, I gave up my ambitions on a temporary basis which soon turned into a permanent matter. When I approached my brothers for understanding and help, I discovered they were 'strangers' and the hostility developed that only made things worse for Mom and I. I came to live my life around my Mom and my son, dealing with their problems of dementia and severe juvenile diabetes. Alone and dealing with every obstacle that you could possibly imagine, including and especially Mom's own 'quirks', I longed for family help. Mom is gone now and my oldest brother has become someone with no conscience, trying to run me out of the home Mom and I shared and I was to have, in his effort to blackmail me over certain family heirlooms that Mom had already given to my son. Things were very difficult to deal with in the caring of Mom, but I am grateful to God for allowing the time with her.

  - Rhonnda

• June 4, 2010 1:48 a.m.

  Taking care of our loved ones wit alzheimer's is really difficult. i'm just a little confused. What exactly do you mean when you say, "let go"? and how would that empower you?

  - La Dolce Living

• June 3, 2010 11:35 p.m.

  Hi...I thought that was a fantastic article...with one caveat...if I let go of the steering wheel, I imagine my life would slip off the road and into a ditch...what exactly is empowering about that?? Without direction and care my MOther probably wouldn't be alive, I wouldn't have my house and I am still confused how that is empowering... the rest of the thoughts and ideas were wonderful.

  - Katy

• June 3, 2010 7:16 p.m.

  My husband has "Mild Cognitive Impairment." So we are on the fence as to where to go next. Alzheimers or Dementia. Each day he is slowly slipping away. When the days are bad the constant repeating of the same thing we just talked about are so tiring. Then the next day is a good day. Most of the time he is in denial so there is no communication. I am lucky though to have our daughter and my sister (retired psych nurse) to help me put things into perspective. It is what is so just go forward the best I can.

  - Sandra

• June 3, 2010 6:17 p.m.

  I just had a birthday. My husband loves ice cream so asked me when he has a birthday so he can have ice cream again. He did tell me his age. His brothers were here for a week in May. Everyday he asked when are those men leaving? I thinking I am coping well until someone says."You have a rough row to hoe".Then the tears well up. We keep a slow pace and if he plans a project,I try to make it happen

  - Joan

• June 3, 2010 3:48 p.m.

  I am a 57 yr. old women who is caring for my 74 yr. old husband who has dementia. This has been so hard for example; We went out of town over Memorial weekend with 2 couples who are great friends of ours. The 2nd night we were there my husband started saying he wanted to go home. Since we came with another couple in their car that was impossible. I told him that we couldn't go home at that time because we were 300 miles from home. He kept saying that he knew we were at this one couples home and demanded to go. He got very angry. Finally a friend of ours took him for a drive and he calmed down on that drive. The only way I can get away for a while is to take him. Any suggestion how to handle this situation?

  - vicki

• June 3, 2010 3:34 p.m.

  And each day a "new" normal appears. It is up and down and ever changing. You never know what to expect. Is today the best he will ever be? I always ask myself that on the good days... you just never know.

  - Katie

• June 3, 2010 12:02 p.m.

  Or as we say in my support group, each day 'is what it is' and each day becomes our 'new normal.' And each day all we can do as caregivers is to try to deal with that 'new normal' as best as we can.

  - Allan