Alzheimer's disease

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• April 27, 2011 8:33 a.m.

  My mother is diagnosed with Alzheimers and she is 61 years old. I live 3 hrs away and my stop father is her primary caregiver for her. I'm so angry at the disease for stealing her memory and brain. I'm still believing that God will heal her and thank God for her healing dailying. She was in her right mind last night when she told me that it hurts to not remember her wedding 12 yrs ago. I could have cried, but just told her that I would be her memory until she regained hers. My brother lives 4 hrs from her, but doesn't call her often. I think he is having a hard time dealing with her, but I just can't give up on her. We talk every two hours daily until it's time for her to go to bed. Her husband and I text daily to stay connected. I'm a little scared and overwhelmed, but I'm not there like my stepdad. I feel guilty at times because I'm not there, but I know I can't stay in that frame of thinking. I visit her at least once a month because I still work. Please keep my mom in all or yours prayers and I will do the same for you. We are in this together with the grace and love of our Lord and Savior..

  - Daph

• April 17, 2011 11:46 p.m.

  I am the medical POA for our Mother, she is in the final stages of Alzheimer's disease. I'm in contact with hospice on a daily basis and trust what they are doing is in the best interest of Mother. My problem is that my siblings second guess everything I tell them, talk among themselves behind my back and can't accept the information I give them. I was the primary caregiver for the 5 years she lived with me. She is now in an assisted living facility. My siblings lived 6-7 states away and visited her once a year.How do I handle this?

  - Joanne

• February 27, 2011 5:54 p.m.

  I'm doing a research project on Alzheimer's I reallllyyyy need a last name from Kay. So I can cite one of her quotes.

  - Maya

• January 13, 2011 12:02 a.m.

  Your article must be emphasize to all the caregivers. In the first place why would caregiver roles feel anger, frustration and impatience with people with alzheimers. In the first place they must think about their job description and they must empathy how people feel about alzheimers. You are right that don't blame the person, balme the disease.

  - stefanie Bill

• December 28, 2010 12:21 p.m.

  When reading Kay's words I thought I was reading about my own Mom. Self-absorbed. So much more so now. She is arguementative and can be very hurtful at times. I have two sisters and one lives with my mom and the other is waiting for a heart transplant and can no longer deal with my mom. I understand. I stay with my mom 10 hours a day while my sister works. I feel much anxiety the moment my eyes open. We are keeping her in her home for as long as we can. She is probably going in to moderate stage as I see many symptoms..I'm am hanging by a thread.

  - Carol M.

• December 14, 2010 11:00 a.m.

  My husband of 60 years was diagnosed with Parkinsons about 1 1/2 years ago. he is taking sinnemet prescribed by his neurologist. he has hallucinations at night. He thinks a cat or animal is in the mattress or he thinks bugs are biting him and he has the sensation of water in his shoes or that there is water under the carpet or floor covering in the kitchen. I try to reassure him that everything is ok. I don't think he believes me though.

  - Bobbie

• November 16, 2010 9:00 a.m.

  My husband has alzheimer's disease. It is the hardest thing I've ever had to face. I am trying to care for him at home, alone. He falls a minimum of 2 times a day; refuses to use his walker; roams all night; sleeps most of the day. I am still working part time and have a sitter with him during that 18hours a week. These 18 hours are all that is keeping me sane. Like one blog, I read, I don't know how much of this is the disease and how much of it is the personality. The one big difference I've noticed is the foul language he uses with other people (the fire department guys who are providing lift assistance for me). I wouldn't blame them if they refused to help him get up again. Thanks for this blog page. It helps just knowing there are people out there who understand the frustration, the anger and the guilty feelings that caregivers have.

  - Wilda

• October 24, 2010 2:11 p.m.

  I am not sure I am in the right spot for this. We have noticed recently that our Mother who has severe alzheimers gets very agitated and upset when movement is involved. She does very well when sitting in same spot and talking with someone but getting up to stand with her walker or trying to use the toilet etc. bring on very strange reactions. Could this be something to do with equilibrium? Any other ideas? Thanks.

  - Carol

• September 23, 2010 9:25 a.m.

  claudia i feel your pain. everyone tells me to blame the disease but when my 85 year old dad attacks me because i ask him to take his medication it is hard.he "wandered" for the first time yesterday and it broke my heart.we found him right away tg.i have a sister but she refuses to help,although she wants my parents "things" when something happens to them.my husband and i work to help with my parents bills and they live with us.we are now trying to find a gps watch for my dad.it is so hard sometimes and it is so nice to know i am not alone.

  - laurie

• September 21, 2010 10:03 a.m.

  Taking care of the caregiver is just as important as taking care of the patient with Alzheimer’s. Alzheimer’s is an ugly disease with no clear direction of manifestation. Therefore each day can present new challenges and new short comings that can cause a lot of stress, sleepless nights and moments of doubt. Lean on the help of others. Adult day care centers like Active Day (http://www.activeday.com) are all across the country and specialize in helping patients with Alzheimer’s. This type of assistance can be a wonderful program for the patient as a means to spend social time with others, receive medical therapy and treatment, while also providing the caregiver a stress-free break from their busy days. Consider adult day care for your loved one with Alzheimer’s.

  - CaregiversUSA

• September 9, 2010 9:48 p.m.

  As a child of a parent w/ dementia, it is so important to blame the disease. My mother constantly blamed my dad's years of having a drink at night on his loss of mentation and found him at times "deserving" of his plight w/ dementia. This was so very difficult on me and my siblings. Thanks for the tip and while some lifestyle habbits do contribute to dementia, it still doesn't change the reality of the situation of the current. Please don't blame...be part of the solution and if you harbor anger get professional help for yourself.

  - Mary

• September 9, 2010 2:39 p.m.

  I know the blame the disease and not the person and I normally adhere to this but sometimes the attacks are so personal and so mean and they hurt so much.

  - claudia

• September 9, 2010 1:36 p.m.

  I some times go on a rollercoaster of emotions in just one day while caring for my mother with early-mid dementia. I am not being mean only truthful. She has a life history of being mildly self-absorbed, vain and argumentative, so much so, my older sister wishes nothing to do with my mother. I know my mother can be difficult but she is still my mother and I try very hard to be patient/loving. Its difficult now, to tell the difference between her illness and her personality. I had to insist we go to the ER the other day- huge argumentative response- mean spirited the entire time. I was correct- the ER docs figured out the issue and she is MUCH better. She refused to see her fam. MD last week when I made the appointment so we ended up in the ER this week. Its hard as she was unkind to me, never thanked me for taking her, spending my entire day there without food- coming home to get her to bed then start my farm chores at 7:30 pm with her arguing the entire time. I just choked it all down as I don't know what is the disease and what is just my typical mother. I feel resentment and hurt, but also compassion for her. It can be emotionally exhausting some days to be caught in a zigzag.

  - kay

• September 8, 2010 12:57 a.m.

  I can relate to Amy's letter. My Mom had a fall recently, and I felt I'd failed her. Luckily, she has remained very pleasant with her dementia, and told me not to worry, she'd be all right. It's hard to see my best friend and Mom have her life stolen away by this disease. This is the hardest thing I have ever had to deal with.

  - Simon

• August 18, 2010 2:45 p.m.

  My mother is my fathers caregiver. He has been diagnosed with dimentia/alz for a while. The progression is slow, but gradual. The anger and aggitation have increased. He recently told my mother he no longer loves her. I can see the disease, but she can't yet. I've recently moved in with them and feel it is good for her, but sometimes I feel helpless. I don't know what to do for her. I want her to find some kind of peace. I know every story is different, but please tell me what to do!

  - Ashley

• August 10, 2010 9:14 a.m.

  Great Blog!!!! For help with your search for an assisted living facility check out silvercensus.com!

  - Sue Bailey

• July 27, 2010 7:56 p.m.

  This may be the first generation facing the dilemma of their elders surviving various illnesses--using modern medical care--only to reach a state of mental decline. People in middle age now are growing fearful of saddling our children with the care of legions of long-lived parents--us--suffering from dementia. There's a world of difference in caring for a frail person approaching 90 who is mentally alert and emotionally stable and one who is not. I know because I have one of each in my life.

  - Alma

• July 27, 2010 1:11 p.m.

  Unfortunately, with the drive to financially successful to the exclusion of human values, the focus has been on caring for one's self and not the "other". I guess I may sound a bit old fashion, but look at what has happened in the finance industry.. A bit off point here, but I just wanted to say that I share many of the frustrations here, however, tend to think that everyone's situation is unique, thus requiring different strategies and solutions. When I find my self reacting, I have to constantly remind myself to step back to gain some perspective. I am discouraged by how there are so many that think they have no obligation to parents and loved ones. It is morally and ethically wrong. I don't necessarily follow a particular religious path, but I do think that there are (or should be) moral and ethical consequences to those who think and act selfishly. That said, I know how difficult it can be.

  - Sharon

• July 26, 2010 11:32 a.m.

  Hello Terry Lyn and others--It is heartening to see that there are those who possess kind and selfless values. I am unmarried to my partner of 16 years, but feel that if I do not care for him, then no one will; not even his very wealthy physician son. I am most angry at those who have chosen to divorce themselves from any responsibility. While I know that exposing him here would do more damage than good, I do wish to expose his cruel and abusive actions as a way to raise his consciousness. I suppose that it sounds vindictive, yet I think that it is more akin to "just rewards" to those who are selfish.

  - Sharon

• July 26, 2010 9:41 a.m.

  So, Terry Lynn, how does your husband feel about it?

  - Laurel

• July 26, 2010 4:31 a.m.

  Thank you all for sharing your thoughts and feelings. I too take care of my 92 yr old mother in my home. She came to live with us 2 yrs ago and has just been diagnosed with multi-infarct dementia and maybe alzheimer's. My husband and I are recently "empty nesters"and sometimes I feel that this is a burden and I should be spending this special time in our lives together, without the constant drain of caregiving. Then of course I feel guilty! It is difficult when so many friends and family say I should not do this. I should put her in a home, It is too difficult and my health will suffer. But I can't leave her where she is not loved, where she is surrounded by people with the same disease. It's difficult to know if her living with us is the best for her. I think it is but then again?

  - Terry Lyn

• July 24, 2010 7:35 p.m.

  It is with interest that I read your comments to blame the disease. This is what I have also dicovered. Yes I do have feelings of resentment and impatience and then of course afterwards I feel guilty. I find that this disease is turnig me into a person I don't like because of my reactions to it.

  - Barb

• July 24, 2010 11:24 a.m.

  Please know, Angela, what a service this discussion forum is to all of us trying to help our loved ones maintain their dignity and sense of self through this illness. I feel myself anxiously awaiting any new words of solace and encouragement. Someone told me recently to try and stand back, not take things personally, and try to observe with a sense of wonder one of life's many stages. Thank you

  - Alma

• July 23, 2010 5:27 p.m.

  Thank you so much, Kathy for you kind words and advice. This allowed me to have a good long cry which I needed. Unfortunately, I read what you wrote and suggested that I get into a support group to which he only became angry. He is in complete denial and is very controlling. He does not want anyone to really know what is going on with him and our circumstances.

  - Sharon

• July 23, 2010 1:04 p.m.

  To Amy, Alma, Donna and others who wrote about the guilt they feel - I once heard a Psychologist at a conference on dementia state ‘we feel guilty because we love. If we didn’t love we wouldn’t’ feel guilty. And the more we love the guiltier we feel’. Be kind to yourselves out there, you are experiencing a natural human emotion. Believe that you are doing the very best you can with the circumstances you’ve been presented with.

  - Angela Lunde