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• March 26, 2013 9:33 p.m.

  to Vicki, your mom will not go in the wheelchair. This is a wrong word for her. The wheelchair is only for handicapped human. But your mom will be not this person. So I say not wheelchair, I say transport chair. Because her body will be transported from this room, place to the other. Please explain this your mom. The transport chair is perhaps cold and so it is better with warmed pillow and so on. The change from the bed in transport chair is better, when she sits in the bed. And you turn her legs outside from the bed. So she can changes better in the transport chair with your help. You have only one head, 2 arms, hands and legs, feet.Your are not guilty, because you do all the things you can do. I am a caregiver for a long time and I wrote a book Rediscover Recovery.

  - Susanngab

• March 17, 2013 6:02 p.m.

  My mother-in-law is in the end stage and has been living with us for about 1 1/2 years. It is a rapidly progressing form and I am one of those people that have a REALLY HARD time with the D word or anything connected. I figure that my Heavenly Father has given me this challenge because I need it. But my question is, how do I stop feeling so angry and guilty all the time. I get so frustrated and I know that she can't help a lot of things. But there are some that she could. She is completely bed-ridden, even tho the drs have told us to try and put her in her wheelchair each day for a little while. She flat out refuses to do it. Now she can't.I have had 16 back surgeries and fell this past Dec and broke my femor,hip and pelvis. Needless to say, it has made things really hard. My husband has had to do so much for us both. I am getting around better now, but I still have a lot of pain in that left side and then I get mad at myself for falling ,I get mad at her because just to change a diaper on her I am in tears. I feel so selfish anymore and I really am not that type of person. I feel so guilty because I think she needs to be in a facility and my husband doesn't. It seems like all I do is cry or stay mad and we argue all the time. I want her to be safe and get the best care possible. Is it here with us or in a facility?She is a dear woman and has always been a wonderful mother-in-law, but like my mom says, this person is no longer my mother-in-law.How do I cope better?

  - vicki

• January 4, 2013 3:10 p.m.

  For Elizabeth, I really believe that you should take all action to relieve your husband of his keys.In our state his doctor has the right to ask the state for this. You would forever blame yourself if there was an accident(God forbid). Also, outlandish sexual behavior without any feeling of shame,especially when not this way in his earlier life needs to be addressed and those around him told as they need to be warned of his change mental state. A private conversation with his doctor is the way to start. Good luck and remember you are not alone, some of us are experiencing the same symptoms with our spouse.

  - Virginia

• December 26, 2012 5:35 a.m.

  Wait a minute! This last post by someone from Italy is interesting, although he gave credit to the Mayo Clinic, the caregivers are giving response to your introductory comments. I am sure Mayo has the research personnel to analyze content. Angela this is yours and the Mayo Clinic needs to protect or copyright this blog. MarieB

  - MarieB

• December 24, 2012 3:56 a.m.

  Please this mail is addressed to Dr. Angela lunde Dear Mrs. Lunde, I have the pleasure to inform you – and also to thank you - I used the 53 comments posted by caregivers to your Alzheimer's blog since May 14, 2008 to December 30, 2010 for an in-depth study on the psychology of informal caregivers. I treated the blog as if it were a focus group and I crossed the statements herein recorded with the scientific or humanistic literature and my personal experience. I have made some important and innovative conclusions that, if they look after these simple words worthy of interest, I send you in a brief description. The study I conducted was presented at a major conference with the address also of the Italian Minister of Health. You can take a look at this report - in Italian but with some expressions in English - to the following link on YouTube where a friend of mine has just uploaded the video of the report: http://www.youtube.com/watch?v=cYAzCQchnrs&feature=youtu.be On this occasion, I send best wishes for a Merry Christmas and a Happy 2013. Antonio Monteleone

  - Antonio

• December 19, 2012 6:37 p.m.

  I have been following the blogs for quite some time and it seems there is one common theme, join a support group. My husband was diagnosed two years ago although there were signs for a couple years before the diagnosis. He has been on aricept and nameda for two years and I don't think they have done anything but maybe they have kept it from getting worse. Anyway, back to the support group discussion, I cannot get away by myself. He wants to go everywhere with me, the grocery store, the fabric store, the dentist. He follows me all over the house and even when I walk the dog, here he comes. If I do something he doesn't like, he gets very agitated, combative and downright nasty. Now how can I go to a group meeting without him tagging along, wanting to know who these people are and what are we supposed to be doing here. It is just easier to stay home but it is so confining. I tend to be a person who can find a solution to most anything but I am at my wits end. This is the first time I have posted a comment on anything so you know I am getting desparate.

  - Dorothy

• December 18, 2012 3:43 p.m.

  I needed this article!!

  - Joseph

• December 18, 2012 10:08 a.m.

  I went to a support group when my husband was first diagnosed, 2 1/2 years ago. It was too much information too soon & to be perfectly honest, one of the people there (another caregiver) rubbed me the wrong way. She even went so far as to analyze something I shared! I don't need that. I find the Alzheimerspouse.com much more helpful. People can express true feelings, positive or negative, without fear of recrimination. There are a LOT of us out here, and I know I am not alone. I also have a deep faith & a pretty good sense of humor, both of which see me through the mountains & valleys of life.

  - Marilyn

• December 18, 2012 7:53 a.m.

  my husband and I had a very active life with many friends and we shared sports together. I kept his memory loss to myself but when I finally admitted to others that he had dementia, it lifted a huge burden. His was caused by many small strokes. We still are able to go walking and out to dinner but our roles are completely reversed. He used to look after our finances but after struggling, I am managing to do it. I still love him and I know he loves me.

  - No name given

• December 17, 2012 12:19 p.m.

  My wife on 25 years diag, officially, 8/05 at age 46. We had 3 children at that time...now ages 14, 19, and 21. and two grandchildren, ages 1,3. I didnt at first accept it... at times still dont. She is 52 now... sweet but I wish, only wish I had a crystal ball. She smokes... forgets... no sense in taking smokes from her she'll find them on the ground, stangers, etc and then try to light them on the stove... I have lots to say and offer to others with early onset with children. Key, get the children out of the home early if you can. Accept help, exercise, keep mind active, do what you can, try to stay positive... trust God. If you dont have faith you will or you will go crazy. Only through the Lord Jesus Christ have I been able to make it this far without going completely off my rocker. forgive yourself. btw, these childrn are and will become angry. Get them out asap to a boarding school, etc if you can otherwise when they become teens you'll have all sorts of problems you dont wnat on top of what you have.. btw, kim just finished her lung cancer treatment... what next? Rejoice in all things, 1 Peter 5:7...and the 2nd chapter of james. and I am tired...so forgive yourself, do what you can and moment by moment.

  - joe

• December 16, 2012 5:17 p.m.

  This is in response to Mary 's comment on Dec 16. My husband was diagnosed 4 years ago at 63. He takes both Aricept and Namenda. He has developed a lot of weird things one being a nervous tick of rapidly sticking out his tongue. He also cannot really perform sexually but developed an interest in constantly wanting to frequent massage parlors! He has bad judgement on financial issues as well as saying inappropriate comments to other women at times. He gets lost in our town he has lived in since birth. I too have felt anger, frustration, worry about what is to come in the future. It is difficult to carry on a meaningful conversation as he can't remember recent events or seem to follow what I am talking about. Consequently I find it easier to barely talk at all to avoid my utter frustration! He then complains I am always crabby. Also I constantly worry about his bad driving but he won't agree to quit driving so of course I worry about an accident! Thank goodness for my wonderful children and great girlfriends or I would be lost! We joined a support group but it he hates it and I have not found it too meaningful yet. Most of the memory impaired are way older than my husband.

  - Elizabeth

• December 16, 2012 4:37 p.m.

  My experience with my 77 year-old husband (who was diagnozed 5 years ago with AD after 4 years of MCI) and with the stories of others in support groups makes me believe that if you have seen one AD person, you have seen one AD person. Although there are many similarities in the way the disease is manifesting itself in our husbands, their own personalities and backgrounds affect them in different ways. Mine was always competitive and at the top of his profession and now he won't even try anything (puzzles, games, activites, etc.) where he has difficulty doing things (which is almost everything)because he doesn't want to appear "dumb." He is not very compliant and doesn't want me to suggest what or how he should do things. He's always been in control and a leader. It's difficult to stay ahead of the game as the downward slope is increasing. Your journey will have its similarities and differences, but one thing we all have in common, is that it is a difficult journey. I am filled with sadness, regret, anger, compassion, resentment, and tenderness. This is one of the cruelest diseases for the victim and the care-giver, who is also a victim of the disease. Grace to all of us in this role.

  - Greta

• December 15, 2012 9:43 p.m.

  If you are the caregiver, it is said you need to take care of yourself first. If you don't you won't be able to care the way you should and you will also need help in the end. Find the support you need through friends, church, neighbors, or family. Reach out to them, even if it is for someone to sit an hour or so. Make a meal, every little bit helps. I cared for my dad in my home for a year. Before that the family helped by going to his home and helping. Once he moved in, I had no family support. I did it all, 24/7 all year. I did ask for help when I needed it, but the family was too busy or had excuses. I had to quit my job and stay home. My family and I gave my dad the best last year we could. He had fun fishing with the great grandchildren and going on outings with us. Even though, he might not of remembered our names or could say the words he needed, we tried to give him moments of happiness. Rest of the extended family lost out on their dad. When you care for a love one, it can be very demanding. I thought I was doing Okay, but with the holidays, I am a little depressed. Doing my best to keep moving and help others where I can. This is my first Christmas without dad. I also am the one taking care of all the estate stuff. So just alot on my plate.

  - Tracy

• December 15, 2012 8:32 p.m.

  So another "story"....recently during a nice dinner "out" I was trying to carry on a conversation with John. He had trouble tracking and I had trouble being patient enough to redirect or redefine. Basically I gave up on the conversation. John is emotionally intact and was able to tell me what it felt like to be in my presence at that moment in a public place. To say the least it was hard to hear but important for me to listen to his feelings of being left behind and fears of abandonment. The conversation that followed was so much more important than the trival comments I was focused upon. I cannot walk in his shoes but he was able to shine a light on his struggles and if I am lucky I will never know the confusion and difficulties that he faces every day. He is teaching me grace and acceptance of a journey not chosen.

  - Rosalie

• December 15, 2012 11:21 a.m.

  I am just beginning my journey that alot of you have been through.I was just wondering do any of you remember any of the very first signs? My husband has not been able to smell much recently, also he seems to be obessed with thing laying out of place, has to put them away. This is sort of personal but did any of the husbands he is 64 seem to lose their interest in sex? There are so many little things like he changed some batteries in something the other day and put them in backwards. Any help you can give me with very first sign wouyld greatly ba appreciated. He has been on aricept 10 mg for year now.

  - Mary

• December 14, 2012 8:26 a.m.

  12/14/2012 I also don't belong to a formal group and have been a caregiver in the past but the torch was passed to a sibling, God Bless her for what she is doing. Our Mother has been suffering from dementia for 4-5 years. The first being my respnsibility of both parents one in a nursing home for 10 years and my mom for 3-4 years doing the daily routines for someone still in their home and seeing the decline and knowing the time was coming for intervening on her part, for more care, Then a fall and stroke accelerated the dementia or alzheimers, to the nursing home and now into my sisters home, holidays have been so difficult for many years with all the anger from all sides and the mom, that I have retreated mostly to my husband and children who are now grown, but being misunderstood for doing this, because of the accusaations of lies that are unfounded by the now caregiver. I have been a full time worker for over 45 years, and dividing my after hours to do shopping and baking and decorating is very difficult and I am being penalized for wanting to do those things. With the caregiver saying I think it is inconvenient to come stay more than a day. I have had such struggle trying to keep my own family happy thru the years and being with my siblings at holidays.this year I have been asked to not come.After not giving yes answer (the day hospice was interviewing).for the date to celebrate Christmas.

  - Glenna

• December 14, 2012 7:35 a.m.

  I too don't belong to a formal support group but every night after work before I return home to my mom (who I have been taken care of for 5 years). I meet neighborhood women for coffee. These women have been taking care of the elderly for years. Some have since retired but what I have learned from them you couldn't learn in any class or book. They do not judge me and they listen to me. I consider myself very lucky to have met them and we have all become friends. I couldn't do what I do for my mom without their support. They continue to give to me everyday. This is my support group. I wish Ela all the best. Sometimes you have to do what is best for yourself.

  - Mary

• December 13, 2012 8:24 p.m.

  Good for Ella it sounds like she is doing what is best for Ella. The support group is only a step stone in coping.I hope I can get to a stage of strengh to cope like her.I would like to think that eventually you can somehow cope with this on an even keel.

  - David

• December 13, 2012 3:01 p.m.

  Jan, Ella added her comment to the blog posting that was published on Nov. 27. You can find it under "Latest entries'' on this page. Thank you for your interest.

  - MayoClinic.com staff

• December 13, 2012 2:56 p.m.

  December 13th After reading your blog today it sounds like I missed out on a very good story by Ella. Can you tell me where I can locate it?

  - Jan

• December 13, 2012 2:19 p.m.

  I do not belong to a support group. My mom is completely bed ridden and requires care 24/7. I've already been through alot of what others are just experiencing. Therefore, when asked for help or advice, I gladly give it. But because I don't belong to a support group doesn't mean I don't want to meet with friends or others. What people don't understand is that, yes we are busy, but we as caregivers also need to be invited to join the real world. I say invited because we as caregivers won't give that to ourselves. Every once in awhile a friend will invite me to lunch. I get dressed up, do my hair and am excited to join the real world. Just an hour or two away rejuvenates my soul. I'm happy to leave the "situation" behind, even for just an hour...because the "situation" will be the same when I return. I guess my message is, invite one of us to lunch or dinner...it will mean so very much to us...and don't forget us because our loved one has an excuse to forget us...our friends do not. An invitation to lunch or dinner would be a great Christmas gift to any caregiver...I promise.

  - Cindie

• December 12, 2012 10:23 a.m.

  I don't belong to a formal support group but 2 spouses that I met via the Mayo Habit Program meet for coffee. We share the challenges, and the sometimes bizarre aspects of our lives as caregivers. Our stories about our struggles, successes and shortcomings and the knowledge that we "get it" sustain us until we meet again. Our unconditional non-judgemental acceptance of each other is our gift to each other. The letting go of heartache and the laughter that we share is the mettle of our companionship. I am not alone in this journey.

  - Rosalie

• December 12, 2012 6:34 a.m.

  After 3+ years, I recently left my weekly support group. Although it still "felt good" knowing that I was helping "newbies" in our support group, I didn't feel that I was getting "enough back" to warrant my continuing to come each week. However, after a few weeks I discovered that I missed getting together with my former group members. But iunstead of a formal group meeting each week, I now meet with several current and former members for lunch in a wonderful restaurant (the waiters know all about us and treat us royally at "our table")and our weekly lunch seems to be meeting all of my needs! We still discuss our spouses and our lives as caregivers, but somehow the informal, leisurely setting over lunch seems to be just the change that I needed. And, obviously, the others who come (including four whose spouses have passed away this past year) feel as I do about our new group. One member said recently, "This new group seems to scratch every itch I have." Perhaps some of you who also feel that your current support group is no longer meeting your needs can also seek out present and former members to start a weekly lunch group. Angela is absolutely correct in encouraging us to "remain connected" to "share our story" as caregivers and to listen to others sharing their stories. Although I continue to remain in email contact with former group members I no longer see each week, there is no substitute for fac

  - Allan

• December 11, 2012 9:28 p.m.

  Gratitude to all who share their lives with us! Sometimes after I have stated my deep feelings on this site, oh, do I feel exposed. But somehow the process of doing this is helpful to me. (Also, I need another course in grammar and spelling I'm sorry to say. Maybe my emotions come out of my heart and mind without spelling and grammar check!) Ella, thanks for your sharing, and hope you are spending your time enjoying yourself in some way!

  - Kristina