Alzheimer's disease

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• October 18, 2012 11:31 a.m.

  It's hard when a friend gets too involved when the " family" is making the decisions re support services. When you know your friend has needs but the family is in denial and too busy to address them. You can't walk away but the stress of living w the situation as is is painful. At what point should a friend talk w the persons physician, not wanting to offend " the kids".

  - Donna

• December 19, 2011 6:01 p.m.

  I will be with you through thick and thin...

  - christine

• September 29, 2011 12:38 p.m.

  I have just found out that a friend whom I love has dementia,at a fairly early stage I think. I want to help, and to offer to spend some regular time with her,especially so her FT husband caregiver can take a break. My first visit went poorly and I would like some suggestions. I didn't know what to do or say when she told me several times that there were other people in the house (all her family) and she went to another room to be with them. I didn't know how to stay with her the whole time when she put on her sweater a few times and told me she would walk me home as she headed for the front door, and after dragging it out as long as I could, I left. Then I went back with the subterfuge of telling her I needed a band aid, dragged that out until I was escorted out again. Then I just hung around outside watching her sitting in front of the tv until her husband came home. Please comment, because I truly want to help this way on a regular basis. Thank you.

  - Ann

• August 13, 2011 2:58 p.m.

  Thanks for posting everybody, I read through each of them and found that I am not alone. My Mother was diagnosed last October with dementia so my husband and I decided to move in with her. We sold our house about a month prior and was looking for a place about 50 miles away, closer to work. Since mom is a widow and the rest of my siblings live out of state, we made the choice to stand with her and by her side. This year has been tough, since my siblings don't call or inquire about her, much less visit, I feel completely alone. I understand where she is coming from, but it would be much easier to make decisions and discuss things with my family. So, thank you everybody for writing down the real things you are going through. I will be watching this blog for some support as you post.

  - Mari

• July 31, 2011 9:43 a.m.

  As someone caring for a spouse of age 85, with advanced AD, I have found some comfort in knowing I am not totally alone. We have been together 33 years and I noticed his AD in about year 2000. He kept getting lost and make funny comments to conversations and while others thought this was funny, I knew something was terribly wrong. I work full time to provide for care during the day while I am working. He also attends Day Care on Sat while I do the errands. The rest of the time, he is with me and he just follows me or sleeps. He doesn't know me but knows I am always there for him. He has 6 children and I have two. My two visit from time to time but the other 6 never visit or call. He also has 17 grown grandchiuldren and 7 great grandchildren who all live close and they don't call or visit. I don't mean to ramble on but I work to get out of the house and I spend my pay on a caregiver. I am so frustrated He can't be left out of your site for a minute and I see no way out of this. I can't afford the cost of full-time care. We used to travel and had loads of friends that they have disappeared. I find myself getting very depressed and need someone who cares about me. Somehow, Need help and don't know how to find it.

  - Donna

• July 28, 2011 7:06 p.m.

  As someone caring for a spouse, age 66, with AD I read this article and boy could I relate! Most of our friends have come forward to be FRIENDS and I couldn't do it without them, however I lost who I felt was my dearest friend for 36 years. How I'd love to xerox and send the article to her! This is the first time I've posted but so identified I had too.

  - Nan

• July 15, 2011 5:03 p.m.

  Dear Angels, I loved reading your article "Friends don't forget friends..." I wish I could make copies and send it out to all the friends and relatives who have forgotten us (my husband who is suferring Alzheimers, and ME). Of course I can't do that. Any suggestions on how to let them know what I am feeling without being blunt?

  - Vivian

• June 19, 2011 3:58 p.m.

  Hi Shirly, sitting here thinking about you and to say hi, i just read over everyones comments again, makes me feel not alone in this long journey of what lies ahead of us. How is your husband doing?

  - Winnie

• June 11, 2011 8:29 p.m.

  Sooty - your parent is not suffering from Alzheimers....more likely old age dementia - most patient live an average of 10 years. The last 4-10 years - the cant speak, feed themselves, toilet etc. My father was "diagnosed" at 67. I have a sister that was "diagnosed at age 52. It has been 4 years, she is in a nursing home cant feed, toilet, speak or recgonize her own children and husband at ANY time. Please dont confuse old age dementia with Alzheimers. It is not the SAME disease. Not even close. My 94 year old grandmother had dementia.

  - Dee

• June 6, 2011 12:37 a.m.

  I care for my elderly parents in their own home. My mother has Alzheimer's and my father has old-age dimencia. It is very hard for me to see them diminish and every time I go to visit them (twice weekly) to help them to shower and organize their meds for the homecare person to give them, it is a challenge to get my strength in order to deal with my mother and dad constantly fighting and misplacing things and my mom hallucinating about relatives visiting who are left without saying goodbye or repeatedly asking the same questions. My mom and dad sometimes make me feel like I am going crazy myself, because mentally they seem to be declining at the same rate. When it is so hard for me, their youngest daughter who happens to live the closest to them, to deal with all this, how can I expect friends to visit and deal with this situation. My older sister is even hesitant about visiting, I think. She even told me once, when she visited last year, that while she was staying with them, she was afraid that they would wake in the middle of the night and not recognize her and think she is a complete stranger. Perhaps it is best for people to stay away and not see them this way. Most people don't know how to deal with it.

  - Denise

• May 19, 2011 11:21 a.m.

  I just had to post an Amen! to that. My mil & I feel so isolated as we have no visits other than obligated from friends or family...but we will survive...sigh

  - Birdie

• May 9, 2011 11:48 a.m.

  Theresa that was spot on. You hit the nail on the head. Truer words were never spoken. God bless you !!!

  - Terry

• May 7, 2011 9:53 p.m.

  There is NO doubt that the job of primary caregiver is the hardest job anyone will perform - emmotionally and physically. I am the primary caregiver of my mother-in-law. With many similar experiences associated to posts about family members and friends turning their backs. Same thing here. Emotionally / Logically I have gone up, down, round and round over this seemingly common response of so many people. One person earlier tries to make logic just like I have over time - "it's hard for my son or daughter, I don't know what to say..." SO WHAT! Guess what people, IT'S NOT ABOUT YOU!!! These are friends, parents, neighbors, aunts, uncles, sisters and brothers to someoneone - these people need and deserve to be loved more now than ever before. The biggest problem in todays world is that people who turn their backs or say "I can't deal with seeing them this way - I don't know what to say...blah, blah, blah" - I repeat - GET OVER YOURSELF - IT'S NOT ABOUT YOU! Figure out your coping skills, face your fears - educate yourself on the disease - they are MORE FRIGHTENED THAN YOU BY FAR!!! GO AND VISIT! Put yourself in their shoes - Never Forget....what comes around - does in fact go around. Instead, Be the TRUE EXAMPLE of UNCONDITIONAL Love toward a Loved One, Friend or even a random act of Kindness to a complete stranger who has nobody. No more excuses - These people are scared and lonely - Visit Them! Please! God Bless You!

  - Theresa

• May 6, 2011 4:00 p.m.

  Hi everyone It's true you sometimes find yourself alone in this journey. Many times I feel frustrated and tired. Just then, I see a glimpse of a person scared trying to reach out to me in need of love. That's how I see my mother-in-law. I married my husband 10 years ago and for the last 7 years we have been taking care of his mother with AD and his dad with CHF. It's sad to see how family and friends that they used to take care, have turned their backs on them. That is what had angered me and frustrated me. My husband and I have lost our jobs, lost our home due to having to care for them 24/7, but we will continue doing it. We love them and always remember how wonderful and loving they were. Even with the disease, they still are wonderful and loving. Too bad the other family and friends don't know it. We have asked for help several times, but excuses never seem to lack. I thank God for the strength given to us and for blogs like this, where we can vent.

  - Maria

• May 6, 2011 3:58 p.m.

  Bless God and thank you Floyd I know what your going through because, I lost my mom in 2003 to this disease and my dad in 2005 to this disease also and I'm now taking care of my sister with Dementia and my oldest brother has dementia too and lives out of town with his family but, all-in-all our family is working together and we will never stop and we thank God for you and others just know your wife is smiling down on you.

  - Renee'

• May 6, 2011 6:32 a.m.

  I want to share with everyone this flash movie, the patients are aware of the caregiver's presence and behavior, therefore must be kind to them to alleviate their "sufferings" http://www.inspiringthots.net/movie/alzheimer-prayer.php

  - Sooty

• May 6, 2011 5:31 a.m.

  Through loving care and patience we can overcome a lot of difficulties when we deal with our beloved Alzheimer patient....do not be afraid to bring them to social occasions, they will behave gracefully and very normal amidst not-so-familiar acquaintances; this is my experience in taking care of my mother who has this sickness since 1994 or earlier. She is fine all these years and the more she meets people, the "brighter" she is.

  - Sooty

• May 5, 2011 4:25 p.m.

  Shirley, thank you for such kind words. You think you have problems until you read other comments. One thing for sure my family are all there for me and hopefully when help is needed they will still be there for us.

  - --winnie--

• May 5, 2011 10:08 a.m.

  Been away for awhile and just getting caught up on this blog. Oh how my heart breaks for all of us.....the difficulties of our days. And they are difficult and extremely hard. And for some it's imaginable to have to take abuse and have no support from family and friends. It stinks with a capitol "S". I don't know why but people are so scared to be around our loved ones. We as a society don't want to see "ugly" and it's an ugly disease physcially and mentally. Those of us in the trenches know the meaning of the word tired and stress !!! Why can't our goverment help, why can't our family and friends help......I have know answer...I wish I did all I know is I love my husband and will care for him with all that I have ....even if it does me in. As I watch the royal wedding I listen to the vows "in sickness and in health" and that made me cry because those words struck home. All be well and know your not alone

  - Terry

• May 5, 2011 4:40 a.m.

  Pretty sad. But is it the friends or those with alzheimer's that's pulling back?

  - Mike

• May 4, 2011 8:48 p.m.

  I have found partially that I may have reacted the same way when friends had any bad or terminal health condition, that it is not that friends flee from their friends, it is just that they don't know what to say. They know that the person before them is not the same as before, they know that they can't carry on a conversation with the person, they know that the person will most likely not know they were even there after several minutes even maybe not even know who they even are. They are not sure if certain subjects should even be brought up,,, For instance, my husband with dementia talkes all the time about shooting himself. He use to love to belong to a gun club ect. All his friends had this in common as a hobbie. Now I ask them please not mention guns as he gets the thought of harming himself all over again, and goes on for days to what happened and where are his guns. So I can understand people not coming around. The kids tell me they can only take about 4 hours of seeing their dad this way, and come around maybe once a month. THAT I don't understand. I hate to see my husband worse everyday too, but I love him and want to make him feel safe, loved and comfortable as long as I can. I love and forgive friends that don't come around so much anymore, I love the ones that do. I have found that myself have also changed, I learned to be patient, more loveing, more forgiving, and blessed that I still have my husband here at home with me.

  - donna

• May 4, 2011 2:23 p.m.

  Floyd's posting hit home for me. My husband's Alzheimer's has sent friends and family packing. Where did they go??? I equate our situation to the lepors of Roman times who were shunned by society, and often feel that we are being treated exactly the same. My husband's children have vanished, we have been excluded from dinners, outings, and visits with "friends". (I use the term lightly) As Floyd says, the rest of the world walks out. But I justify the absence of these "friends" by telling myself that their understanding of this horrid disease frightens them. When we are frightened by something most of us will avoid it. I guess I can appreciate their fear, however I not sure I can forgive it.

  - Annette

• May 4, 2011 12:23 p.m.

  The most surprising aspect of being a caregiver to my husband who had 61 was diagnosed with dementia is the loss of friendship, both his friends and mine. But even more surprising,are new friend we have made. I just hope that when friends of mine confront dementia in their loved ones that I will be there for them in the way they need.

  - Nancy

• May 3, 2011 10:27 p.m.

  Winnie Please know that you are not alone on this long journey. I chose not to tell my husband that he had Alzheimer's. His sister is in the very last stage of Alz and he can't bear to visit her. My hubby just thinks he has a tough time remembering and expressing himself. We have no yesterdays or memories of same. The things that built our 56 yr. marriage are no more. It has become a day to day existence. Some days are better than others. Those are the days I live for.

  - shirley

• May 3, 2011 4:38 p.m.

  Hi everyone. Your stories have brought me strenth for what is ahead of me. My husband age 66 now was diagnosed in 2008 with early onset Alzheimers and it is hard, harder on him to accept it. Just finished reading Still Alice--his yesterdays are disappearing and his tomorrows are uncertain so what does he live for. He lives for each day. He lives in the moment. Some tomorrow he'll forget that he xrayed almost every person in this small town but just because he'll forget it some tomorrow doesn't mean that he didn't live every second of it today. He will forget today but that doesn't mean that today didn't matter.

  - -Winnie-