Alzheimer's disease

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• June 2, 2011 10:36 a.m.

  Beautiful post! My father passed away after may years of suffering from Alzheimers. By the end, all the elder care center that he was in could do was wait until he passed. IT was a very hard time, but I know I'm stronger because of it. Thanks

  - Rick

• March 22, 2011 5:13 p.m.

  Can anyone help me understand why my mother, who is in 7th stage and who has generally been pretty non verbal for the past year or more has suddenly in the last few days has started chatting. She still does not make much sense, but she is talking in sentences and with a clear, strong voice. Also, she is able to use both hands in feeding herself as compared to so many days when she would sit with hands folded in her lap. However, she remains confused about my identity, where she is, time and date, etc. I am really trying to understand what is happening and is this a typical occurrence. She is in a very good medical unit within her senior citizen complex, but there is not alot of education or support for family on issues such as this. I visit with her daily. Thank you!!!

  - Vicky

• March 9, 2011 7:02 p.m.

  last 2004 my mother died she was diagnosed of Alziamer`s disease stage 4 , eventhough i had a knowledge of it it seems very depressing and stressful in our part both financially and emotionally as well . but i had to gained more strength in my part cause as i saw her everytime and every minute i know her time will come and we would lost her cause her disease kept degenerated and we couldn`t do something to gained her as jolly she was before... i miss my mother... i really was but what i can do if the desease inflicted her that leads to her death ...but furthermore i might say to myself that i had been a good daughter to her eversince cause i had been loved her and cared her most until the last days of her life .

  - Maria

• December 12, 2010 2:26 p.m.

  Although I have professional experience with those afflicted by ALz. and or dementia, It is very hard when the disease hits you personally in your family. Especially during the holidays, I feel so alone because the connection I had with my uncle when he was well, is lost. HE remembers me, but there is limited conversation and it is challenging to redirect him. He seems to have lost his long term as well as his short term memory thus to even look at pictures or talk about the past, he does not recall even his own family members, especially those who have predeceased him. Perhaps he does recall, but it may be too difficult to deal with, thus he shuts down. I find it hard to communicate with him altho we were quite close when younger. I am at a loss as to what to talk about, he often falls asleep, doses off, and then all he wants to do is go out with his homecare worker. I am so frustrated. I wish I could figure out what I can do to feel closer to him and to rekindle his life as well as mine.

  - joy

• July 16, 2010 7:54 p.m.

  I also wanted to say I recently met another person who, God bless him, has his mother now with it and his father just passed. He is having to redo his moms entire house and she is degenerating faster than he can even re-do the house, and he knows he's going to get the disease. Just when you thought you had it bad. Also, I knew more than what I told the poor guy about what all was going to happen. He asked me that dear God I couldn't say as much as I knew about. Tried to keep it more positive than I was thinking. I know so many people with parents with this disease.

  - JA

• July 16, 2010 7:43 p.m.

  Well, I lost three women in my family from alz and each was very painful. Grandma aunt and mother. I didn't formally go get training but I underestimated somewhat the severity these situations would turn into. One of them tried to kill themself when she found out a diagnosis and another o.d. ed from too much medication at the old folks home bringing each of them to about 90 lbs. It was more than I expected the decline so they all were in wheelchairs. I was the sole caretaker as only woman child. It was hard mentally and financially. I didn't opt to go to formal therapy, and a few years later I am going to go work in healthcare, however I spent a few years dealing with the emotions. It was worse because my father is and was in denial and embarrassed by the whole thing. So not only did I just have to deal with the situation, but sometimes there are other family members who aren't down with the diagnosis. I also did better after I removed my mother's things out of sight out of mind. It took me several years to even sort through all the physical stuff. I needed more help no one helped I regret to say. I lost tons of time from work and was terrified to move my senior across state lines. The paper side of things was monstrous also and took a whole other set or relatives to handle. I feel so bad for anybody else going through this.

  - JA

• July 5, 2010 8:09 p.m.

  I wrote sometime back and just wanted to update everyone on what has transpired. FYI for those who dont know -- I am 55 with a 21 and 16 son(s). My husband was diagnosed 'positive' for alzheimers in 2008. It has been very difficult and...'whatever' is all I can say. We recently placed my husband in an assisted facility geared for alzheimers. I have watched him deteriorate over the past few months drastically and with the kids at home found I could not handle everything. I could not give hime the attention he needed nor my kids who are HIS kids. This has not been easy & one of the most difficult decisions in my life. I've watched my husband 'die' every day and know that this is just another step in this experience. I wish everyone the best of strength and know there is no guilt where guilt may be felt. there is no 'less' when you want the 'full.' I want to share what a char said in a show I watched (and don't quote me verbatim)...'I like what the french peasants say...praise the God of all and drink the wine and let the world be the world.' I guess I'm just letting the world be the world around me because I cannot change was has happened nor can I change its outcome. I can only cope with what my world is at the moment. My heart sends its warmth to everyone. - Therese >^..^<

  - Therese

• May 19, 2010 4:16 p.m.

  I can't agree with you more Connie. My mother is basically well cared for and respected at the memory care unit but there is a lack of information and communication with the nursing and administrative staff. The aides however are honest and helpful but they are not the decision makers. By the way, the aides should be given more benefits and respect by the corporations. Recently their overtime was completely cut for example. The patients, the caretakers, the family all need to mobilize and "act up". It's shredding too many lives. A 90 yr. old friend came to my rescue when my car broke down this week and I was amazed to see her memory has improved since I saw her 2 years ago so I must find out how that happened.

  - Kate

• May 18, 2010 6:38 p.m.

  I do agree that there are character strengths to be gained from the process of caring for someone with dementia. In addition, however, I think it is very important for caregivers as well as early-stage patients to begin "acting up" in the same way that AIDS patients did nearly two decades ago. As a result, they nowhave viable (if costly) treatments that are extending the lives of many and creating hope where there was despair. And here we are, struggling with an epidemic of dementia without a single long-term treatment in sight. I do believe that it would be very empowering for all of us if we would begin to pressure the pharmaceutical establishment, our congresspeople, the NIH, whomever it takes, to fast track trials, release novel therapies, put real money into the research and get the job done. Perhaps we are all too tired from caregiving to do anything... Or too isolated because we have no time to get together. My husband was diagnosed at just 57, six years ago, cutting short his working life and incredible artistry as a builder. I hate this disease and see no reason to accept it as inevitable or character-building or anything else. I guess my motto is Dylan Thomas'--"Do not go softly into that 'good' night--Rage, rage against the dying of the light."

  - Connie

• May 4, 2010 9:57 a.m.

  Kate---Those are words to live by! Thanks.

  - Katie

• May 1, 2010 1:43 p.m.

  Thank you for your kind, thoughtful words Dawn. I have spent many happy and delightful hours with my mother and hope to again this summer. It was a volunteer on the Alzheimer's Assoc. (800.272.3900) hot line who advised me to forget the family tension and focus on my mother and enjoy whatever good times I can with her.

  - Kate

• April 18, 2010 3:44 p.m.

  To all of the bloggers that have posted on this site: please know that my thoughts and prayers are with you. Also, your honesty and comments are not only touching but very helpful to me and to so many others. You have my gratitude and hope that the good memories you have of your loved ones will one day dull the painful ones that occupy your minds right now.

  - Dawn

• April 15, 2010 6:54 p.m.

  The Alzheimer's Assoc. had a nationwide hotline for Alzheimer's caregivers and meetings in many towns and cities. I've gone to some and it was just helpful being with others who are or were caregivers. There are also support groups in many communities. I never realized how crucially important connecting to this or other such organizations is. I learned the hard way by waiting too long. We can't do this alone. It's even more important when family is basically absent either in spirit or reality.

  - Kate

• March 26, 2010 8:48 a.m.

  Emily, Your letter was so helpful in describing in detail what life might be like for us in the future. Could you go back a little and tell what it was like earlier? My husband is only 74, probably in his fifth year. I noticed that he is beginning to sleep two or three hours longer than I do (well, I don't sleep well), is beginning to use the word "thing" more than once in a sentence rather than a specific word so it's sometimes hard to tell what he is saying. We play a card game called Kings that he is good at; we have a good life. I just take care of paperwork, telephone calls, appointments, etc. He drives, but shouldn't. He hasn't gotten lost as I am usually with him. I have to tell him which lane to get into and where to turn--he can't manipulate 4-way stops or left turns without an arrow. He sometimes gets up and dressed in the night and wonders why it is dark outside. He has had at least one major and traumatic delusion. From your experience, what can I expect between where he is now and where your husband is? Thanks so much to all of you. I get a bit of help and inspiration here and a bit there. Thanks, Angela.

  - Laurel

• March 20, 2010 2:48 p.m.

  Reading these comments, I see how many others have faced the same struggles my family did. While my Dad's struggle with Parkinson's and Alzheimer's is now over, I am still learning from it. It is so true that while the challenges are incredibly painful at times, they will change us and teach us as nothing else could. I have written about my Dad, the last months of his life and my experiences with him on my own blog at feistywomansvoice.blogspot.com. I hope the sharing of these thoughts helps people know: you are not alone.

  - Nan

• March 17, 2010 1:22 a.m.

  I like what Gwen's husband said about not setting unrealistic expectations. It's just crazy how much grief, tension and rancor there's been between me and my 6 siblings. My mother's been in a memory care unit for 4 years and she's more content and relaxed there than she was in her own home. The family was absolutely resistant to placing her in care but she was miserable and unbearably alone even with a caregiver or family present. She tried to hide and mask her disease for 8 years of gradual mental decline and she was very shut off. One day on the phone I just asked her what she wanted and she told me she thought it might be a good idea to go to a "home". My siblings didn't believe this but it finally happened. After that they assumed there was nothing more to be done. I have to learn in order to maintain my own health and sanity to ask for things for my mother with clarity, brevity and conviction. Period. It's late and I thank you all. I took a long walk in the sunshine today, something I used to do all the time. Please, take walks and eat nutritional food. Good night.

  - Kate

• March 13, 2010 11:18 a.m.

  My wife's Alzheimer's disease began showing itself about 4 years ago. I had no idea just how bad this disease can be, and probably still do not. She can no longer write, read, or even spell her own name, along with many other things. We are both eighty years old and this is our second marriage, now 20 years. Twelve years ago she had a quintuple bypass which damage her heart and thus she takes many medicines. As the disease progresses I have gotten caregivers who come to our home seven days a week, which relieved me of giving her a shower, medicines and peparing for bed at night. However, I realize now those efforts made me feel a much larger part of her and less guilt as to whether I am doing all I can for her. I have gotten used to her asking me where I have been doing our 20 years of marriage and similar questions. I have not gotten used to the moments when she gets extremely mad at me over nothing or things I cannot even determine. My heart breaks as I watch her decline physically in addtion to her continuing loss of memory. I cannot seem to prepare myself that I will lose her eventually, but I call on God frequently to help me find the strength to face this fact and prepare. Night times and loss of sleep weigh heavily. Reading the other comments posted help me to realize I am not alone and in many cases lucky that I can give her the care that I do. May I always be here for her.

  - Robert

• March 4, 2010 7:31 p.m.

  We are barely on the radar with this horrible disease. My husband was diagnosed with Mild Cognitive Impairment almost 3 yrs. ago. So we are on the fence of which way to go Alzheimers or Dementia. this whole process is so frustrating at times and some of his days are awful. Other's you think he is fine. I do have support from some family members which is good but to be able to write my thoughts are wonderful. Just taking each day as it comes.

  - Sandra

• March 4, 2010 1:07 p.m.

  I just re-read the above article and found these words compelling: "The key I believe is to avoid feeling helpless. With incredible tenacity, many caregivers transform a heartbreaking situation into one of hope and meaning." This is so very true. Very hard, yet very true. You have to search deep for hope and meaning but if you find it within, it can be an amazing experience. And a relationship you would have otherwise never known.

  - Katie

• March 4, 2010 9:47 a.m.

  Kathryn, you comment was so beautifully written. I can relate to Lynn, Katie, and so many others. My mom has been in an Alzheimer's unit for 18 months. She has so quickly been slipping away from me, and I fondly remember the memories we shared together. I don't get much sibling support, but my husband always tells me not to set unrealistic expectations. I just continue to do what I know to do. I am so thankful that my mom still recognizes me, and gets so excited everytime she sees my face. I know that God is sovereign, and His love for us never wavers.

  - Gwen

• March 2, 2010 8:46 a.m.

  I could have written Lynn's letter. Her situation and thoughts are so much like mine. It helps so much to read about the experiences of others and to get ideas that will make this season of my life an encouragement to others.

  - Kay

• March 1, 2010 4:06 p.m.

  I read recently that Alzheimer's is a "family disease" and I wonder if it's worse with large families like mine and Katie's. My mother's doctor told my brother recently that we should all try to visit her before she becomes unresponsive. As I said she was diagnosed in 2003 and just turned 92. This summer I approached two of my sisters about making final arrangements for my mother. They got angry and insulting and we haven't spoken since. I worry that it'll fall to me again and at the last minute as in my father's death. I'm afraid to approach my brother, my mother's executor, because he may get angry and abusive. I am told that I must learn to forgive them. I think in this case I will have to forget before forgive. I am just not that big a person, not that spiritually evolved. Regarding Emily's post can you do an internet people search to locate your husband's children? I read in the New York Times once that Alzheimer's is so heartbreaking because our loved one disappears bit by bit in a gradual erasure. I'm an independent person or so I'm told, so just let me state that nobody is strong enough to handle this alone as I assumed I could and as my siblings expected me to. If family or friends aren't there we must seek other connections, other support and it's never too late. Thank you, Kate

  - Kate

• March 1, 2010 8:53 a.m.

  Thank you for this site. I am learning so very much as I care for my 93 year old mother. Sometimes I learn new things. Other times you confirm what I have already suspected or figured out for myself. God bless you all for the effort you put into this.

  - Kay

• March 1, 2010 8:43 a.m.

  We are just starting the journey into the deep world of Alzheimers with my Mother. I an beginning to learn that she will not get better. It, as all of you know is such a heart-rending disease. I cherish every day with my Mother - good or bad. I consider the bad days like big black clouds but then sometimes the sun breaks through and that is the blessing. God is still in control and we have to be able to leave it in His hands. He made us, He knows us best!

  - Lynn

• February 25, 2010 6:03 p.m.

  I wrote some time ago when Jim's dementia(and other conditions were't really bad. He could use his walker & we'd go to the doctors or stop at McDonald's after an appointment. One by one, these small moments have been taken away. Several weeks ago he no longer wanted to see tne TCM movies. Because of his macular degeneration, he can't see much anymore. He can still listen to CDs & Igot some with music from the Forties & some old radio detective shows, like Richard Diamond &Sam Spade. He still listens occasionally to them. We were married 46 years on Feb. 7, but we know we will not spend another anniversary together, at least with us both in the same form. He sleeps most of the time, about 20 hours a day. Our conversations are becoming pretty one-sided. I am pretty teary most of the time. Today he was only up to eat. I get him to the table, he eats, gets his medicines, and is ready to go back to bed. The thought of losing this wonderful man with whom have shared 46 years is almost unbearable. I've tried to get in touch with his son & daughter by his first marriage, but haven't had any luck with that. When he went to bed , he said he hoped this was the last time he has to go in there. I'm the sole caregiver, he's in hospice & he gets visits from a nurse & a home health aide. I get visits from a social worker. We have thins set up for our burials in a veterans' cementery & with the undertaker. That was done last summer when both of us

  - Emily