Alzheimer's disease

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• January 22, 2012 10:48 a.m.

  Thank you. A very inspiring and uplifting message

  - Stephanie.

• July 28, 2011 4:39 p.m.

  Really--look at your words--some changes seem negative but they are making room for positive--really, I mean really. So it seems negative my relatively young husband has suffered from dementia for years and now at 63 can not do anything he used to. So its positive and having to do things on my own opens doors and makes me try new things. Wow --I am glad to hear that cause I was so foolishly seeing it as negative that my husband of 43 years can not fully enjoy his or our life.

  - Teri

• July 26, 2011 12:51 p.m.

  Oh, Curt my heart breaks for you. We in the Early Onset group do a juggling act not to be believed. And my goodness you still have children at home. I hope you learn patience it will help and for me I always ask the question "disease or spouse ?" and to survive u Got to, got to give the pass if it's disease. It makes the heart and soul easier. You can't blame someone for something they can't control. My husband this last weekend had to adjust my being away for a funeral of my Best Friends Dad. First time I left him with non family members, I came home to an Angry man, mad at me for leaving him with other people. I listen to the anger (really fear) and then said I am sorry you can't understand so lets go Weed the garden. Over the weeding his VERY anger mood pass. I wasn't mad, why should I waste my energy on what he can't change. We love our spouses......Curt it's not what any of us thought our lives in our 50's would be like. I think accepting who we are and what we can do will give us the guidance we need to get through this. Everyday caregives to this disease need all the love that we can give ourselves to make it.

  - Terry C

• July 25, 2011 12:44 p.m.

  Thanks to all who have shared their thoughts... it helps in knowing others understand. Our jouurney started about 6yrs ago with intermittent "forgetfullness". The evening he came with the checkbook and said he couldn't figure it out; for someone who excelled in figures and logic was like the brick that hits the head... we went through the many "rule out" test and then heard beginning dementia and later Alz. I went to several Alz classes and read every Alz book and tried 2 support grps. Yes, he was started on meds, but it was like chipping away a cell at a time and progressively downhill. He lost all interest, needed help with most activities of daily living and his personality began to change from the kindess, most thoughtful person I had known. We made it through a few years and then I needed someone to come in so I could do the normal errands. He began falling more and at first, with his help, I could get him up; later kind neighbors helped. As things progressed he was hospitalized a couple times for other health issues... each time failing more until about a year ago he went to an assisted memory care unit. The adjustment period for both of us is difficult... the daily "I want to go home", the many falls... thank God no breaks... for me, the helplessness, crying, sadness, depression, loss of the joy of life we knew, just missing him here... Even now there are good and bad days... but guess that's life... thanks for being there...

  - Joanna

• July 23, 2011 4:19 p.m.

  Curt.....I meant www.thealzheimerspouse.com

  - shirley

• July 23, 2011 4:15 p.m.

  Curt: I think you would find it very helpful to go on website www.alzheimerspouse.com. Lots of early onset advice there.

  - shirley

• July 23, 2011 2:08 p.m.

  Just concluding my initial thought. .Wonderful people who come into the home when I am gone. Additional expense, but well worth it. .My wife has such limited capacities for doing things.. can still carry on conversations . . with "mostly" accurate assertions. .Does not matter any more as to the specifics or details of conversations. .Still is able to recognize most everyone, although the names escape quite often. I have never considered myself a good caretaker and certainly would not have in a million years predicted this outcome. I am impatient and often get frustrated, which I know does not help matters . .I worry and am so anxious about the future..There are days when I am so convinced that I can not do this anymore. .My wife does not enjoy games, can no longer read or write. .cannot dial a phone or work a remote. .She had been so active in the past. She enjoys going for rides..at times short walks. .I know I have to start the process of looking at assisted care living facilities. .No LTC insurance. .Moved to area where there is additional help with family, for which I am grateful. I can't imagine those of you who are alone in this. .I know work for me is my escape and at time my sanity. .Have continued to try and carve out life in spite of all that is going on. .People tell me that I have to take care of myself and kids. .I will, but it is very difficult. What do the rest of you caregiving spouses of early onset do to make it through? Mid 50's. .

  - curt

• July 23, 2011 1:50 p.m.

  I've read with both empathy and heart-felt sadness the stories of so many of both the care-giver and those cared for. I see so many similarities, yet everyone has a unique and special story to share. With the similarities, there is a distinction between the relationship of the caregiver and those stricken with this relentless disease. A stricken spouse elicits different emotions with a care giver than that of a parent or sibling. .The heartache is similar, but the emotion is different. My situation is that my wife of 32 years (55 years old currently) has had symptoms for 10 years, but was "officially" diagnosed (early onset AD) a year ago. . She was in the prime of her career, motherhood and active community member. . She had designed new home, which we were forced to sell. (built on premise of dual incomes) . had to leave a familiar neighborhood. .give up a career in which she obtained Doctorate level university work. .I go through the guilt of not being an understanding,attentive and compassionate spouse. .We had been told for years that it was psychosomatic, borderline personality disorder, mood disorder. . up to 30 different anti depressants were prescribed ..finally a conclusive identification. .She has already progressed through the stages where any medications would be helpful. .eyesight is failing. .major depth perceptions, limited congnitive ability. .speech is becoming laborious. .I am continuing to work. .Have wonderful people who come in the home when

  - Curt

• July 22, 2011 1:42 p.m.

  i am a 91 yearold mother with numerous health problems with a 62 year old married son with frontal lobe dementia. He wants to stay with me but I physically and emotionally cannot care for him. He stays with me usually 4 days every other week. Hw no longer has language capability and needs help with all his daily activities. How do I keep him occup[ied when he is with me. I have not been able to find any games to occupy his time when he is with me. He cries whem he has to go back home and I love him deeply. How can I help him?

  - mother

• July 22, 2011 5:52 a.m.

  Dear Mary, In answer to your post. Seek a divorce. It is the kindest and best thing for him, to have the advantages provided in Canada. And it's the best for you. You have another option after divorce -- you could go to Canada and marry him again if that was what you felt deeply that you wanted. God is surely much more forgiving than we can understand.

  - Jay

• July 21, 2011 11:57 p.m.

  Play simple games with them. a tral domino game - simple card games, It seems to keep them more alert

  - Joe

• July 19, 2011 8:46 p.m.

  Thanks Kathryn! Glad you had a great weekend! Those are moments that you will treasure forever! Always remember that it is OKAY to feel a mess sometimes... it is an aweful disease that we are dealing with. When i was consumed with All that was negative and happening in my life... the misery grew louder. (Like a little kid wanting attention) But when i acknowledged those feelings and focused on positive things as well, that is when things came into balance for me... Things will always get out of balance again & again, but i found a perspective to help me get it back in line and keep it running a little more smoothly for a while. Your story of shopping made me smile for you. Glad you had a wonderful 2 hour moment with your brother! Mom and i had Hot Dogs for supper, and she couldn't get over what/how they were made. She thought they were really a clever thing! She thought it was the first time she had ever eaten one and that i was very clever for knowing how to make them. That moment gave me a treasury of smiles to make it through a rough time that awaits ahead! Thanks again and hugs!

  - Darla

• July 18, 2011 2:49 p.m.

  To Julie & Darla, thank you for encouraging me! My weekend was better - I took one posters advice here and took my brother out shopping - he held the list and pushed the cart, it was a 2 hr. adventure as opposed to a 15 min. one; we had some fast food; laughed; and he was so appreciative to get out of the house and I felt great letting go of the resentment at that moment and enjoyed my brother before he becomes a total shell of himself. I had stopped thinking about how horrible it must be for him to be stuck in the house 24/7. I also contacted the social worker on Friday, and am going to start the long term care facility process (which can take four years). So, people on this website are teaching me to (1) take care of myself; (2) enjoy my loved one while I can; and (3) when it is time to turn my loved one's care over to an institution it will be in the interest of both of us. Thank you all so much! My little prayers I send up constantly give me strength most of the time; but sometimes I'm just a mess, need to have a good cry, and then start over again the next day.

  - Kathryn

• July 16, 2011 9:15 p.m.

  My significant other was diagnosed in 2006 with AD. He has progressed from still working and flying to Southern California weekly, to no longer flying (alone) and then to no longer going into the office at all. He is a very succesful business person and owned part of the company (and was able to continue to go into the office without really performing the full function of his job). He retired in June and doesn't miss working at all. This from a man that was an amazing work-a-holic. I am still working and own part of my company so I am trying to navigate caregiving and working. We are so lucky because we have the financial resources to hire help. We started employing someone full time this year. While the duties of caregiving have been reduced, the caring has not. I still worry about whether I am doing enough to keep "Joe" stimulated and active. We were both business people that loved working so we didn't sit around thinking about retirement or "what we really wanted to do". I don't feel angry or cheated in any way -- what I feel is lonely and having been a single person for many years, I know what it is like to no longer be part of the "couples" world. I have some activities that I really love (backpacking and golfing). I always did those two things by myself (with other friends) anyway. I still enjoy Joe's company and he still makes me laugh. I try to live each day one day at a time (that concept is not just a cliche).

  - Linda

• July 15, 2011 5:55 a.m.

  My sister Sheila and I took care of 3 Alzheimer's patients: My uncle (Fr. Jim), my dad (Ray); & my mom (Ag). We were the caregivers from 2000-2009. We look back and miss them all terribly and think " How did we do it all and come out of it somewhat sane?" When we lost them we lost ourselves and our identities. My sister and I were so busy trying to please them and accommodate them all; we had forgotten about what we enjoyed in life. So when we lost each one of them between 2007- 2009, One each year. It was a real Journey. But when we lost all of them it was a major loss and major identity crisis, we just looked at each other and said "Now what do we do with our lives?" We first realized we lost 10 years of sleep since 2 of them were wanderers at Night. Then the emotional pain of their loss was next and to this day we are are OK and finally enjoying life and finding ways to enjoy the simple things in life once again. What helps us too is to take pictures of them with us even on trips as if they are still with us because after 9 years being so close you can imagine the loss. However , I wish we would have had this advice from Angela's Corner back then. Most importantly regardless you do need to take time for yourself and Imagine what life will be like for you when you lose them.Search for what makes you Happy and go from there.

  - Maureen

• July 14, 2011 10:09 p.m.

  Dear Angela, Is it in the realm of possibility to revamp this wonderful blog site in such a way that participants can respond, if they so choose, to individual comments. Often questions are asked, but if anyone answered, it is hard to find those answers. Thx.

  - Debby

• July 14, 2011 8:29 p.m.

  My husband is in th 6 yr. of azhiemers, and has dificulty walking. HE IS 92 AND I am 89. I do not have many friends because most are gone. I would like to be able to go out more but it is hard to help him walk and help my self too, so I just don't go out. If we go to the senors club he falls asleep all the times. He is so gentle loving that I hate to leave him home and hurt his feelings. Any suggestions?

  - remedios

• July 14, 2011 7:40 p.m.

  I truly believe that many of these folks need to contact the Alzheimer's Reading Room on-line. They all will find more support to help them work through many of the things they are experiencing. The Alzheimer's Association should learn from this sight that is helping so many of us that are trying to live in the front row with this disease! Many thanks to Mayo for giving us some chance to speak out!

  - colleen

• July 14, 2011 4:03 p.m.

  What a wonderful upbeat story! Thanks for sharing. I also have started a blog about my Mom and I. My Mom has FTD. It has been very rewarding to put my feelings and thoughts in writing. Please take a look and tell me what you think. The address is: http://dementiacaregiversunite.blogspot.com

  - Jackie

• July 14, 2011 3:55 p.m.

  My story is the reverse. My husband with MCI (Mild Cognitive Impairment) reached the point he couldn't drive and thus couldn't transport his kayak. I found a neighbor who encouraged us to leave the kayak on her property next to the bay. BUt my husband ( age 70) became disoriented with the new launch place and a police helicopter had to look for him. We sold the one person kayak and borrowed the 2 person kayak from this same friend. Now we go together and stay close to shore and it's a pleasurable activity.

  - Genie

• July 14, 2011 1:27 p.m.

  Each day that I can I pray to Jesus for strength, help, patience, compassion and whatever else He thinks that I will need, do I fail yes but Jesus is very forgiving. Tuesday Bob was outside in the hot temperatures and high humidity, Tuesday night he was very restless and was up every two hours to go to the bathroom so I got very little sleep as I had to tell him to turn the lights off and leave the fan on low. Wednesday he ate very little and slept the day through and went to bed early and slept until around 7 this morning. I don't know if something was wrong as when I asked he said he was fine. He dries the dishes, helps me outside and loves to go to the store. He is not left behind as whoever takes us to the store stays with him and the manager has told all he is to have one Chocolate Chip cookie. He loves to go to Church so I have learned to tie his tie, does it look as good as what a man would do, no, but who cares. I have learned to do many things in the plumbing line and cut the end of a hose off and replaced it. I am 77 so feel I can learn what I need to. Praise God I have always tended to finances, except we always talked about purchases together, I miss that but how wonderful to hear him tell me he loves me many times a day or that I look nice when I know I don't at that moment. Treasure the time and let the spouse help as much as possible. Yes, I do love him as we have been together 58yrs.

  - Dorothy

• July 14, 2011 1:19 p.m.

  My Mom recently had to start wearing Depends. I thought she would refuse; however, after three accidents in one day, she accepted the new underwear and is fine with it. I miss my Mom. It is hard to watch her condition degenerate. I wish my son would try to understand that she has no control over this. This was a wonderful blog. I loved the symbolism.

  - Vicky

• July 14, 2011 12:59 p.m.

  My beloved husband is now on 20 mgs. Aricept. We went to WalMart for groceries today. He was scared of using an elecric cart. I explained to him that most people get out of the way so as not to get mauled by a cart with a person riding it. After all, it's bigger than they are. I gave him a list of meats to buy. HE FILLED THEM ALL! SO MUCH BETTER THAN LEAVING HIM WITH A "SITTER". IT GAVE HIM CONFIDENCE IN SOMETHING HE COULD DO AND HE FELT SO GOOD ABOUT HIMSELF. HE HAD HIS "GROCERY LIST" AND FILLED IT ALL! DON'T MAKE THEM SIT AT HOME AND FEEL WORTHLESS! LIKE ANY OTHER DISEASE OR ACCIDENT, RESTORE YOUR BELIEF (AND THEIR'S) THAT THEY CAN STILL DO THINGS AND FEEL IMPORTANT AND LOVED.

  - Marjorie

• July 14, 2011 12:48 p.m.

  Beautifully written; all so true and encourageing. Thank you. Be brave sisters and brothers - we are all in this together and Our Lord will always help us if we ask Him! Mary

  - Mary

• July 14, 2011 11:29 a.m.

  I would like to respond to Kathryn, as I am in the same situation. My sister (54) was living with my husband and two teenage daughters for the past 2 years. We finally reached the stage where I felt I could no longer care for her. I have a demanding job, and took on all responsibilities for my sister after work because I feel she is my sister therefore my responsibility. It was a very stressful time for my family and my husband, children and I have to admit even I were getting to the stage where we resented my sister for the loss of time that I had to give my family. We recently found an Altheimer's facility for her and she seems happy. She is by far the youngest resident. I feel guilty when I visit because she does want to come home with me, but she does seem to enjoy the many activities offered. Kathryn, like Rose, you must think of your own wellbeing. I have such a sense of relief and can get back to being a sister, not a caretaker. Good luck with this difficult situation.

  - Julie