Alzheimer's disease

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• May 2, 2013 11:27 a.m.

  I started writing poetry. It has been a wonderful release from stress and keeps my mind away from the difficulties with my husband's dementia.

  - Barbara

• June 14, 2011 2:44 p.m.

  Try and not feel guilty about anything you have done or not done. You are there and were there for your loved ones. Others that could have been were not. I took care of my mother for 4.5 years without any help. My family abandoned her. I almost killed myself trying to care for her all day every day. I stayed up all night for a year and a half worrying that she would stop breathing. I would sleep from 6 am to 11 am. I stayed up with her since she could only sleep for an hour or two at a time. The rest of the family was no where to be found. They were out having fun enjoying their lives. God loves you and knows you need help. He created you because he wanted someone just like you. Your DNA makes you different from any other human that has ever lived. God loves you every single day and He is still on the throne. Don't forget it. He does know what you are going through. You will be rewarded for all that you are doing so hang in there.

  - Greg

• June 14, 2011 2:30 p.m.

  My mother suffered from dementia and Alzheimer's. When her doctor put her on fluconazole (generic for Diflucan) I noticed her dementia went away. She seemed to be in a continual drug cloud which I thought was the dementia. She was spacey and out of it. After two weeks on fluconazole she was joking around with us. She had not done that in almost 6 years. I felt like I had woke up in the Twilight Zone but it was nice to have her back. The doctors do not like to prescribe this drug because they have been told that it may upset liver enzymes. I had my mother's liver enzymes checked weekly and there was never any problem. I think it is a warning from the pharmaceutical industry because it actually helps and eliminates the need for the dementia and Alzheimer's drugs that have to be taken every day until death. There is a lot more money in this every day management of disease than there is in the curing of disease. Watch out for "disease management" doctors. There are something like 57,000 drugs and not one that actually cures a disease. That should be a giant red flag to us all!

  - Greg

• February 16, 2011 4:24 p.m.

  Cynthia, I am so sad for you. I understand your challenge to a degree. I, too, cared for my husband's guardian when she was in her late seventies. She was very strong and healthy except for Alzheimers. She was a petite woman and deeply spiritual, but this disease produces odd behaviors it seems. We had to eventually place her in a nursing home because of the sudden spurts of violence (I had children at home). It was many years ago - now there is medication that can help her relax. Get it for your MIL before you get hurt. Help is available thru your county nurse also, I think. Alz is an awful disease - seems to affect people differently - no one size fits all. Caregivers must not be "victims". God bless you. You need to be able to sleep at night, in peace.

  - Ginny

• February 10, 2011 6:11 p.m.

  Intake care of my mother in law 78for three years now my father in law passed 3years ago I had to quit work to do this my mil treats me like her maid my husband thinks it's funny I have no help whatsoever from no one I do everything for her feed her give medications cook do laundry now at least once a week she attacks me grabs my head shakes it pulls my hair but yesterday was the worst she pushed me so hard I fell against a hot stove and hit my head on the microwave I had to go to the doctor because of an egg size bump well I hane a concussion husband sex she doesn't know what she is doing do I have to be killed before he does anything he can't be around her more than five minutes cause she bothers him so much I guess I just need to get this off my chest cause I feel so alone my own mother has told him she will sue him if anything else happens

  - Cynthia

• February 2, 2011 7:55 a.m.

  Thank you Roberta, and Joan for your comments. This is a wonderful site to chat isn't it! I'll check to see if the network is available here in south Jersey. Right now I would welcome a "listener" !!! My husband loves to talk about his early childhood in W.Va., his years of contracting, etc. stories both true and imaginative! A young second cousin in Ohio phones him and lets him talk at length - just listens, laughs, and encourages the memories (true or untrue). I consider her an angel!!!!! She has never met him but learned about us from her mother, now deceased. When she phones unexpectedly about once a month, my heart sings! I hope to meet this sweet caring young lady someday. She is aware my husband completely forgets the conversation when they hang up but considers him (81) like a friendly Grandfather I guess! God bless anyone who has the patience to just "listen" (playing checkers is good too)

  - Ginny

• January 30, 2011 10:27 a.m.

  In response to Ginny's 1/27/2011 comment about not being able to find a paid companion to sit with her loved one. I have found several wonderful companions through Elder Network and Home Instead Senior Care here in Rochester. I have someone in my home everyday for 2 to 3 hours and someone to sleep over 2 nights per week. Mom is totally bedridden and requires assistance with all activities of daily living in addition to constant reassurance for her anxiety. I don't believe she could get that one-on-one attention in either assisted living or memory care units. It works for us.

  - Roberta

• January 27, 2011 10:06 p.m.

  Thank you Ginny I think Namenda also worsened my mom's agitation I agree the facility needs to be constantly re-evaluated, and we as family members need to be around alot to notice changes and needs. God bless you all who are caring for your loved ones at home.

  - Joan

• January 20, 2011 7:14 p.m.

  I have read Joan's recent comment. In my husband's case I discovered medications caused problems - I stopped Aricept, Namenda, and another one after just a couple days - nightmares and agitation occured and who needs that. Just plain Zoloft worked best to curb anxiety. Even that and Halidol have side effects of course, but in his case, they are working okay, and Dr. gives the lowest possible dose of each. Just think about it. I did not have any evaluation - just an ordinary cat scan and Dr. visits once every month. I care for him at home and am learning how to meet the challenges - so far. Assisted living homes are wonderful but facility must be constantly evaluated.

  - Ginny

• January 19, 2011 9:27 p.m.

  My mom was diagnosed with mild cognitive impairment about a year and a half ago. We moved her to assisted living as it was clear that she could not live alone anymore a year ago. She had a complete neuro-psych eval started on aricept, prozac and namenda has almost daily visits from family members and is in a caring, interactive living facility. Since early fall she seems to be steadily declining she's lost over 30 pounds (she is obese), does not seem to feel hunger, she is more and more confused and is constantly saying "I gotta get outta here" seeming to refer to her living facility but she can be anywhere when she says it, she is agitated and angry, she was started today on seroquil but not before she shoved an aide into the wall, My mom has been physical in her life it is so sad because she seems miserable for almost every waking moment. Any suggestions as to how to help someone who is so angry, confused and agitated. She also wants to "go back to bed" when ever she is not engaged in an activity. She's being followed by her primary MD and a neurologist (who recently said it is probably AD) and she will have a consult by a psychiatrist soon, also we are bringing her to a geriatric assessment center with Alzheimer's specialists

  - Joan

• January 17, 2011 12:59 p.m.

  I bought several books, including "The 36 Hour Day", to help in my search for understanding dementia. Years ago it was simply called "hardening of the arteries". One book is called "What If It Is Not Alzheimers?" I call my husband's problem "vascular dementia" but lately their are signs of Alzheimers and I know I must adapt to more "new normals". Another challenge - it is not easy to find a family member or volunteer, or someone who will sit with a senior in the home and be paid for it. I am constantly being told to get out of the house more frequently without my husband. I wish!

  - Ginny

• January 16, 2011 2:37 p.m.

  I just found a note my mother wrote to herself at the beginning of her disease which show some awareness of her condition. She made a list of nutritional supplements, certain foods and the necessity of staying "mentally alert". Then she made a note to get more information about Alzheimers with an address. My mother's friend told me she was amazed about the speed of my mother's decline after my father's 1998 death (Mom is 93 now). I have often wondered about the connection but am told all the time that the disease was probably already present. I think that there must be a connection between grief and dementia but since it's not scientifically provable it's ignored. What do I think now that my mother's had the disease for almost 13 years? That we, my 6 siblings and I should never have left my mother alone to spend half the year in Florida. I doubt it would've changed the course of her disease but she must have felt so bereft and for that I feel regret. There's got to be a better way.

  - Kate

• January 12, 2011 7:43 p.m.

  My heart goes out to all of you trying to do your best for a loved one with dementia/alzheimer. Having cared for my Mom, I now realize that the general heath care profession does not understand what is involved in caring for a loved one with lets just call it 'memory difficulties'. There is so much more involved and symptoms depend on the individuals and so do calming techniques and medicines. What may work to establish some "normalcy" for one may not work for another with this terrible affliction. Our health care professional at all levels need to be educated about the terrible disease called alzheimer/dementia because they have no clue how to treat these patients to keep them safe and to preserve their dignity. Cancer and its treatment options are understood and accepted. But alzheimers/ dementia is a psychotic condition that is still not understood by the medical profession at large. Statistics indicate that this affliction will grow as the population ages, but we have a poorly educated medical profession to address the issues presented by such patients. Those patients in the the future will be you and me. It is a scary scenario especially if you have no wife, husband or child to take care of you and advocate your well being as what is still considered just "being crazy" with dementia/azheimer.I implore all of you to get the word out. The public and medical establishment needs to educated to help our loved ones today and tomorrow. What can I, a daughte

  - connie

• January 11, 2011 6:44 p.m.

  For a while I felt I was on the only one dealing with a difficult situation, it helps to know I'm not after reading other people's stories. My dad died of a heart attack 18 months ago at the age of 63, 10 days later we found out mum 62 has vasular dementia and early onset alz and could no longer live by herself. I live 3 hours away and have 2 small children a 2 year old and 5 year old. Since Dad's death mum has declined at a rapid speed within 20 months she has gone from talking, cooking some meals and driving a car to not speaking at all, unsure if she recognises us and after a fall 5 months ago which resulted in a broken hip, she is now not mobile and sleeps approx 22 hours a day with small moments of wakefulness 5 - 10 mins at a time. My last 3 visits I never saw her with her eyes open. It is heart breaking on top of that I have had to mover her as I have had numerous problems with the care facility she was in. I guess I just feel a bit stretched with 2 small children, a business, living 3 hours away and trying to do my best for mum. There I feel better now - moan over - lol. Thanks :)

  - Catherine

• January 10, 2011 12:58 p.m.

  When my husband began exhibiting signs of short term memory loss, accelerated by TURP surgery, I researched vascular dementia, read several books by caregivers for Alzheimers, and prepared as best I could for a long lonely ride into the twilight zone. I use the ten absolutes: Never argue - instead, agree. Never reason, - instead, distract. Never shame, - instead, distract. Never lecture, - instead, reassure, and never say "remember" - instead, just reminisce. Also - find a good doctor who will perscribe anxiety or anti-psychotic medications for your patient - never think every day will be the same - expect the unexpected. Living with a husband or parent who repeats subjects for hours, has bizarre dreams and hallucinations, and who may even become threatening -requires sacrifices and lots of prayer. Faith keeps me going. Don't give in or give up - I keep thinking "what if it were me and not him".

  - Ginny

• January 9, 2011 5:38 p.m.

  My husband and myself are the caregivers for both of our mothers. He himself is disabled with multiple physical health and mental health issues. I work full time and attend college to further my degree. Most times he is very supportive and helpful. But when he is having a bad time himself, I feel I just don't know what I am going to do. My mother is soon to be 89 years old a widow of the only man she ever loved and was married to for 56 years before his passing, seven years ago. She was officially diagnosed four years ago, but probably was in beginning stages long before. In a three week period my mother went from asking for my father, to crying herself to sleep, asking why her mom and dad won't come and get her. It is so sad to watch this process. I don't know how to comfort her when I cannot know what is really going on inside her head. She cries almost all the time. She sleeps off and on most of the day. I try keep her involved in familiar activities to keep her awake so she sleeps at night. One thing I find she enjoys is folding towels and simple items. There isn't enough laundry to keep her busy all day so I have gone to extreme measures. I have emptied my linen closet of clean items just to have her fold them. She and my husband sometimes getting into arguments as he tries to keep her awake or tries to get her to eat. Once when I attempted to referee the bout, my husband responded with, "She never gets in trouble". OMG, who says something like

  - Deb

• January 8, 2011 6:06 p.m.

  I made a postivie step this week in that I "hired" my 19 year old granddaughter to help me. She came to our house every day this week and fixed lunch for grandpa, did some house work and laundry. That ment that I did not have to go to work early in order to have a longer lunch house to come home. It has done several things: I am less worried and tired, the house is clean, my granddaughter has some pocket money, BUT my husband delights in her company and we are making him happy within the parameters of what he can understand. This may only last for a short while but I am going to try to just do a week at a time. Maggie, ccaregiver for husband, Carl

  - Maggie

• January 7, 2011 1:59 p.m.

  has anyone had the experience of their doctor giving your loved one Abilify?

  - mary

• January 6, 2011 1:56 p.m.

  One work of advice is to get help especially when you are the only family member. I contacted a friend that does companion care and she visits my mom twice a week now for 2 hours each visit. They play cards and visit. This allows me to have those days off and I am at peace knowing that she would contact me with any concerns. My mother had spinal fusion surgery and I was going every day and calling multiple times. With working a full time job, I felt totally exhausted after 6 weeks of that. She was in a body cast to support her back and had to be helped in and out of it. I also relied on help from the facility she lives at, CNA and another companion to help put the brace on in the morning. I am fortunate that my mother has the finances to support this. I will always be grateful to those that have helped me through this stage! She is now out of the brace and now we are back to only dealing with the dementia.

  - Karen

• January 6, 2011 1:48 p.m.

  I agree with many feelings that others have posted. It has been the most stressful time of my life. I am the only child living here locally to take care of my mom. My sister is supportive but only comes out once a year for about a week. I am fortunate that my mother still is in the early stages of dementia where she still thanks me for the care and support that I give her. She does have occasional temper outbursts but I try to realize that this is probably her way of letting out her frustrations because of her life being out of control. She is aware that she can not remember short term events and now is starting to slip on some of her long term memories. I find myself angry when this happens because I don't want to accept that we are now moving into the next phase of the disease. She can still live independently in a retirement place but is close to having to move to the dependent area. I grieve for this next move because she will lose her nice patio home and move to a one room arrangement. I realize that I may be the one grieving more than her because as long as she feels secure, she seems to be happy. I have also found that her Exelon patch has helped her tremendously for mood enhancement. When she was off it, she was more angry and compative. I know this isn't for every patient and needs to be discussed with their physician.

  - Karen

• January 4, 2011 5:51 p.m.

  Jo Ann, I punched my sister after we celebrated my mother's 93 birthday (and year 7 since she was diagnosed with Alz). I posted on Jan 1 about my 2004 Christmas memories with my mother but forgot to put my name. It still just haunts me that we couldn't give her comfort in the earlier phases when she struggled to mask it. She slept a lot of the time thankfully. I want to tell you all that she actually became less miserable as the disease progressed and after she was moved to assisted living and felt safe. We also became closer as the disease progressed as she seemed to accept it and I learned patience and how to reach her through shared activities mostly outdoors walking and in drives in the country. I have made a vow which is very difficult to keep not to focus on the terrible, hurtful things my siblings have hurled at me over the years. Their lives have not been undone by health and financial problems and some of them just visit our mother once a year. I'm not writing anything these weeks but I'm going on blogs that inspire me and spending time with some of Mom's friends. I don't know if being my mother's caretaker was what made me ill and depressed so I urge all of you to learn more and get support from whatever source. I thought I could do it alone but it's impossible.

  - Kate

• January 4, 2011 1:02 p.m.

  Yes Robin i too have had the same experience with my mom. It is nice to hear but bittersweet in so many ways. But i too will hold it close for the future is looking bleak.

  - Karen

• January 4, 2011 12:55 p.m.

  I have read comments now for several months, without posting anything. After reading I see I am not alone, it helps. Today i called a support group in my area for i need helpwith my aging mother with dementia. I thought i could do it on my own, now after 5 years i realize i cant.

  - Karen

• January 4, 2011 12:33 p.m.

  I was tempted to feel sorry for myself today until I read some of the other comments. From now on I will pray not just for myself and my family, but for anyone who is in this situation. It's ironic-for most of his life, my father was someone I feared-the angry, critical disciplinarian. If there is any silver lining to this disease, it's that he now has wonderful imaginary "memories" of good times we shared, trips we went on, etc. His face lights up as he "remembers". And he tells me that he's proud of me and loves me more often than he ever did when I was growing up. I know this won't last-he is more likely to become angry and aggressive as the disease progresses-but for now it's what I hold onto when I'm frustrated and tired. Hope somebody else out there has the same kind of gift for now.

  - robin

• January 3, 2011 11:10 a.m.

  I agree, Jo Ann. I am also in therapy for depression/anxiety. I would recommend it highly to anyone who is caring for a loved one with AD.

  - Cheryl