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    Angela Lunde

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  • Alzheimer's blog

  • March 22, 2011

    Couple shares story of Alzheimer's journey

    By Angela Lunde

30 comments posted

Alzheimer's Caregiving

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Tom and Julie sat in the doctor's office awaiting his conclusion. Placing his hand on her knee, the doctors looked directly at Julie, age 57, and said, "Now remember that you are who you are regardless of what you have and regardless of what I am going to tell you. I'm fairly confident that you have Alzheimer's."

"Julie, do you remember what we did after we got the news you had Alzheimer's?" asked Tom, her husband.

"I do," said Julie. "After I was told the news, we crawled into the back seat of our car and cried. Later we tracked down the biggest DQ Blizzard we could find."

Julie and Tom sat next to each other in two large leather chairs, reflecting on the events since Julie's diagnosis just 11 months ago. But this was not your typical exchange between a husband and wife. Instead, this conversation took place on a brightly lit stage in front of more than 1,000 people at the Meeting of the Minds Dementia Conference, March 12 in St. Paul, Minn.

The conversation turned to the difficult choices they've already had to make.  Tom spoke about his job change and the reduction in hours he made to be more flexible and physically available to Julie. He shared how they've taken steps to reduce their living expenses, including selling their home. Recently, they made the tough decision to move into a senior independent living facility where they're the youngest.

Alzheimer's has required Julie and Tom, who have been together since high school, to negotiate new ways of communication. They spoke candidly about the challenges that memory loss has placed on their long established patterns of understanding one another. They openly discussed how their once equal partnership has taken an unbalanced and often uncomfortable shift in roles and in power.

Tom brought up a therapy session that the couple had back in August. During that session, Julie said she wanted to deal with the "end game." Tom asked Julie to share what she meant by that.

Julie responded, "When I can no longer take care of you, Tom, or be there for you in the way that you need, I worry. What will life be like for you? I ask that you surround yourself with others who will care for you. If one of those 'others' happens to be a woman, that's OK with me."

Through all of this uncertainly, though, Julie and Tom embrace humor. "As you know," Tom said, "I like to playfully use your loss of memory against you, like trying to convince you that it's been months since we've been physically intimate."

Julie laughed and then replied, "There are just some things we women don't forget!"

As this, the final session of the conference, was coming to an end, Tom concluded with these words:

"This experience has called on us to make a lot of decisions and to get clear about our values. We have put a premium on spending more time together and expanding our network of people who now share this experience with us. We chose to live in a place that is close knit and where there is a deep sense of community. We are making choices that are life giving."

I will never forget this extraordinary couple or the exchange they shared.  For some of us, what we see reflected in Julie and Tom is our own humanness — a raw look into the vulnerable journey of life we all walk through.  I believe Julie and Tom's story is not so much about trying to "get through it," but rather the spirit to live life fully "in it."

30 comments posted

blog index

  • May 8, 2012 9:19 p.m.

    This story is sad and beautiful at the same time. Sad because the pain they both went through, and beautiful because through sickness and health they are working through it.

    - connie

  • August 12, 2011 12:15 a.m.

    I live 3 hours away from mom. Dad passed last year, they were divorced. She has been living in an elder community with her dog. I am sure the dog is keeping her well. Every day she seams to be doing well especially after getting the medicine. I stay with her for 3 to 5 days at a time. She still dresses well, we do laundry, take her for lunch and spend time just sitting. Mom was an artist. Now she spends her days looking at family photos and naming all her brothers and sisters over and over again. Mom reads all signs on her drives with me.. It can be so sad sometimes but I like her better now than when she didn't have dementia. In our early years she was very critical of me and my children. Now she can't remember their names.

    - donna

  • June 16, 2011 11:34 a.m.

    Kathy - I understand every thing you are going through. My Husband was diagnosed at age 57. He was still working in law enforcement- Once he was disgnosed he retired. Our life changed at that point. Yes I hate the disease that has taken my husband from me. He kept getting worse and things had to change, the day he turned the lawn mower over on him with no one home, I knew that we would have to let the house go. He started doing things that I knew he could no longer be left alone all day. Although I wanted to I knew I could not quit working we needed the income. My life had already went from wife to caregiver. Even though he still knows who I am - I beleive he looks at me to solve his problems not as he once looked at me as his wife. Because I did not want strangers looking after him- my oldest daughter and my 16 year old grandson moved in with us. She is a trained Medical Assistant- but agreed to give up working to help care for her Dad. I need her there, but Andy and I losted our privacy. She also losted her privacy. This was a big adjustment for all of us. Andy says all the time he want things to be like they were. No always in words as he can no longer speak whole sentences. He uses a lot of gestures.It seems that every day I see something diffent in him - his disease is moving so fast and the docters just tells me that sometimes it does that.I hate it that I have to watch him go through this, I love him but he is no my Andy.

    - Linda Kay

  • June 6, 2011 1:23 p.m.

    Like Julie and Tom, my husband and I have been together since high school. Rod is 53 years young and was diagnosed a year ago with Alzheimers. He repeats himself asking the same question over and over. He can not understand how things work. I look at him and he still looks the same, but his mind is so different. I love him and will be there for him, but right now I am angry. I can't believe that my life has changed so drastically. I still have to work and don't know what we will do when he needs help in his daily living. I wish I could quit work and stay home with him. No one really understands what we are going through. They can offer their ears and it does help to talk to someone, but I wish this was not happening to my husband and me. Whenever something new and different with him comes up, it is like a slap in the face because I know that I am slowly losing the person I knew and have to come up with new ways to cope. I HATE THIS!!

    - Kathy

  • May 22, 2011 8:59 a.m.

    I think the fear that my mother has right now is of great sadness to me. She says she is "blacking out" and then "she's back". I assume this is the brain not functioning properly and it is something I cannot help her with. She is scared and is now remaining in her room all the time not going to eat with friends and losing what little life she has. Has anyone experienced this with their loved ones? How did you cope with it??

    - Claudette

  • April 13, 2011 5:16 p.m.

    My husband was diagnosed about 18 months ago with mild Alz. He is older than me and retired. I am very busy in a demanding profession and really love my job. I also LOVE my husband very, very much. We are just at the beginning of the journey and there are already times when it is hard. I have increased my patience. Slowed down my pace. We really enjoy every day together and talk alot about the things that are important. About 8 months ago, my husband seemed to be getting worse. His doctor increased his medication, but he progressively lost his short term memory at a surprising rate. He also lost weight. About 4 months ago, we took a trip to Italy together (before it was too late). It was wonderfully romantic and bonding. And I made sure he was eating three meals a day. After the two week trip, his memory seemed to be improving. He confessed that he had not been eating meals when I was at work. WOW! He had lost 20 pounds and we thought it was just age and Alz taking over. He is eating regularly, now. I leave meals and make sure he has eaten them. He has improved so much. Part of his not eating was forgetting and the other part was not realizing it was important. I am thrilled to have a stronger, healthier husband today, but know it will probably reoccur again as his disease progresses. Has anyone else had a similar experience? Any advice?

    - Patricia

  • April 4, 2011 2:05 p.m.

    This is a wonderful blog. Thank you. I can relate to Joanne at this point except her husband can make lists and do simply household tasks - for my husband, 81, that is gone now. He is lying down at least 20 hours out of the 24 and sitting down the other 4 hours or less. His left knee is so painful he can barely walk but refuses to go to an orthopedist. A small dose of Haldol twice a day and 50mg. Sertraline keeps him from the psychotic episodes and he is pleasant to live with as long as I agree with him and never ever argue!!!! It is a cruel disease - I call it vascular dementia. And 2 of our 4 children just can't deal with it. One thing that helps is a fish! Of all things - we have one beta fish and my husband "talks" to it several times a day! Another is a jig saw puzzle - we only did one - of a beautiful locomotive in the mountains and I had it framed for his room. He also can play checkers like the pro he is (as long as he is reminded what color he is!) It gets lonesome without good conversation and few visitors in a rural area. I just live day to day and try not to even think about the future to the point of worrying. Better to face each problem as it comes because we can only handle one at a time anyway. Worry is unproductive. Prayer helps.

    - Ginny

  • April 4, 2011 12:05 p.m.

    My dad was a veteran of 3 wars, put himself through college, graduated from the War College and died of Alz in 2008. My mother found strength she never had before to be beside him. My sisters and I were with him daily and laughed about the wonderful sense of humor he developed after being a very strict father. Hospice was there at the end and was wonderful. My mother has survived after a bad time, has a friend and her garden. The death was hard on my sisters and I & we have drifted apart. Alz takes its toll but my dad is always with me.

    - Linnie

  • March 30, 2011 7:07 p.m.

    My husband (age 73) was diagnosed with mild cognitive impairment about 5 years ago, and was told it is probably not Alzheimer's, but could lead to it. He is slowly getting worse. I find it hard at times to cope with his loss of mental ability and logical thinking. He tends to obsess or waffle about decisions - very different from how he used to be, and does not function at all well under even mild stress. At the same time he's sometimes as sharp witted as ever! I never know which person I'm with - the one who can remember long-past events and quote various authors, or the one for whom a reference to a past or current event is news. He is good at making lists for himself, and looks after many household tasks as I have some physical limitations. I've had to take on all financial planning activities as well as organizing things like our health-care directives, wills, taxes, and family records. I've made a detailed list of our bank info, credit cards, pre-authorized bill payments, passwords, passport numbers, etc. and have told our sons where they can find the info if it's needed. I wish there was something else I could do to ease what will surely become more of a burden for both of us. Neither of our sons seem to realize that complaining to me about their father's state of mind doesn't help - I've told them that if they have a problem with him, they should talk to him about it, or drop it. As we say in Al-Anon, I didn't cause it, and I can't cure it.

    - Joanne

  • March 30, 2011 5:38 p.m.

    My husband a slow onset of Alzheimers until he had to have some surgery. After the surgery, little by little he stopped walking, could not get up from a chair and would not eat. There was no discussing anything with him. He only wanted to be home. I hired a service that provided caretakers. He fired every one of them. He found fault with everyone and everything. He then had a psychotic episode and was sitting in his wheel chair screaming that he wanted the police, that he was being robbed etc. He also started chasing after the aides in his wheelchair and made lewd sexual advances towards them. When he insisted on talking to the police we managed to get him to a hosppital where he told his story to a uniformed security person. The hospital transferred him the gerio/psych ward at. He was there ten days, screaming and hitting. Eventually he was moved to an Alzheimer facility where he continued his hitting and his sexually inappropriate behavior. The hospice nurse offered a shot of a medication that would calm him but shorten his life. This made him much more normal and I took him home. After a week he started refusing medication, became incontinent, both urine and bowel. Since he would not let the aides turn him and starated refusing all his medication, he developed bed sores which eventually killed him. I think I shall never recover from this horrible episode. He had been a gentle, consider person. Alzheimers killed him!

    - Rita

  • March 30, 2011 1:50 p.m.

    My mother had Alzheimer disease, my husband,daughter,and I took care of her for four and a half years, and now I facing some fears that I (daughter) may one day develop it. My doctor diagnosed me with Ischemic disease which put me at a risk of developing MS,Alzheimer, or Wilson disease.I do not have high blood pressure or none of the metabolic symdrome and the only thing maybe hypoglycemic which I am being checked now, it is hard in the caregiver and already told my husband that in the event I develop Alzheimer I would like to be in a Senior independent living facility. For now I feeding my body with foods that are nutrient dense, incorporating more exercise, developing my spirituall side, and LOVE which to me is very important in this equation. I want to believe I can heal my body and develop a strong shield against this debiliting disease. The couple/s story is very encouraging and inspiring because it proof to me that with LOve and dedication the situation that arises can be resolved. Right away I am also 57 years old.

    - Gloria

  • March 29, 2011 9:49 p.m.

    Vicki, When I interviewd places for mom to live, I used the website A Place For Mom.com It is a free service, and they were very helpful in finding places in and around my area that would best suit my moms needs. The person I used called and would even make appointments for me and call them for me if I wanted them to. My helper's name was Dominic and he was very kind and helpful! I hope that helps! God bless you and your husband!

    - Mary

  • March 28, 2011 9:14 p.m.

    I would like to know more about these Senior independent living Facilities. Can anyone give me a web site to look this up in our area. My husband has advance Alzheimers and it is becoming difficult by the day keeping up with our home.

    - vicki

  • March 28, 2011 7:32 p.m.

    My wife of 46 years is in the stage where she hallucinates about people coming in the house to steal her things. She can;t perform even the simplest tasks. She talks I to herself all the time and forgets who I am. The hardest thing to take is the mood swings. She is afraid all the time and constantly wants to know when we're going to lose our house. She thinks someone else owns the house. To make things worse our sons and her sister all wants us to go to a nursing home. They talk about her like she's a stranger, but all say "just tell me what you need". We need love and understanding

    - Frank

  • March 27, 2011 7:29 a.m.

    My 85 year old wife of 57 years was diagnosed at Mayo in September 2005 with "dementia of the Alzheimer's variety". Now our conversation consists almost entirely of, "Who are you?" Or some variation of,"Where are we now?" Even not knowing who I am, or frequently who she is, she very often says, "Give me a kiss." She has no memory of any of the 20 trips we took to foreign countries during the first 16 years of retirement. If I have been able to convince her that we are married, she may ask, "Did we have any children?" (We have two boys, ages 55 and 51 who who are vary close emotionally, if not geographically.) She often asks, "Will you take care of me?" She is in that stage which has been described as, "having no past, having no future, and only a very vague present". She enjoys flowers so I keep a fresh bouquet at all times. She was very musical but now never plays the piano. She does like the CDs I got through the Alzheimer's Store with songs by Tony Bennet, Perry Como, and Mel Torme. She likes to ride in our Subaru Outback which I bought because she can get in and out easily. We eat out at least twice a week in places where the waitresses and managers know us. I take her to the same hair salon, once a week, that she has gone to "forever". She was an excellent photographer and I now have 35 of her pictures hung on our condo walls. She doesn't remember she took them, but likes it whe

    - Bob

  • March 25, 2011 11:32 p.m.

    God bless you Tom and Julie...you are both so inspiring for those of us who walk this reality. What struck me as I read your story and these comments is that despite all of the many frustrations this disease can bring....what matters the most, what we hold on to, and what will last FOREVER is the LOVE we share with our loved ones!! My mom has early onset dementia and was diagnosed a few years ago at 66. There are ups and downs...but I always try to focus on "the now" and on expressing my love as much as I can. I think of that saying: the past is gone, the future is not yet, but the present is a GIFT (that's why it's called a PRESENT!) I will pray for all of you as you strive to make all of your moments(repeated or not) loving and joyful...I pray for patience, strength, and faith for all of you :) !

    - Mary

  • March 25, 2011 5:43 p.m.

    I really took to heart this story. My mother ,89 in April,has been afflicted for quite a few years. From the lost teeth,purses and keys to now hardly being able to communicate at all. I am the most like her and I fear I am seeing my future. This story made me feel somewhat better. Perhaps the future won't be so scary if my husband and I approach what might happen with the open eyes of these two.

    - Harriet

  • March 25, 2011 4:15 p.m.

    Thank you for the caregiving of the early age onset AD families. My Greg was diagnosed at Mayo, age 54; is now in moderate stages. We are surviving day to day. The changes in personality, abilities, perceptions are difficult to manuever and compounded with the community setting. Our daughters have been great! Afraid but supportive. I miss my spouse greatly. This disease is cruel.

    - Sandi

  • March 25, 2011 9:30 a.m.

    Thanks Angela for telling this story so beautifully. It was such an honor to be asked to share out story last week, and you have captured what we have said very well. Thanks to all of you that are making comments back. I learned something when I read the comment from Terry - knowing how to respond in the moment based on whether it is the disease or the person!! I love it! Good advice.

    - Tom

  • March 24, 2011 8:46 p.m.

    My wife of 56 years was diagnosed with AD several years ago. My health is good. We are both 77. It is not the forgetting so much as the mental confusion that troubles her. She keeps wanting the impossible, like seeing her parents and sisters who have died. She is confused as to time, place and situations. She wants me to take her home, but she is in the home where we have lived for 36 years. She needs 24/7 watching lest she get into trouble. I have a CNA here six days a week for three hours in the morning. I'm with my wife the rest of the time. If I leave for even a short time while the CNA is here, my wife has real separation anxiety. Taking her out of the house often to stores, restaurants and church seems to help her feel better. She enjoys it, and it distracts her. It calms her down for a time even though she does not remember going the next day. AD is a terrible disease I would not wish on anyone. I'll do the best I can by her as long as I can.

    - Dewey

  • March 24, 2011 1:58 p.m.

    Terry your story is my story :-) Sometimes it's hard to remember if it's the AD talking, or is it really Len? And like you I respond to him the same way you do to your Rick. You made me smile.

    - Angela

  • March 24, 2011 11:22 a.m.

    My husband is in the final stages of the desease at age 76. He now has a 20 word vocabulary, doesn't carry a convedrsation and doesn't understand much of anything. Thank you somuch for this article. Caring for one with this desease does require a lot of love and patience beyone belief. We recently moved into a Senior Independent Community and find so much love, help and caring here.

    - Sharon

  • March 24, 2011 11:11 a.m.

    Peggy .........Rick's in the mid stages of disease and the question I always ask myself .....Is it the husband or is it the disease. And if it's the disease I just smile and answer again ......if it's the husband I act like the wife and every married couples knows what that means :)

    - Terry

  • March 24, 2011 10:48 a.m.

    I really learned alot from this issue. It has really been tough learning all the things to help my husband. He is at the stage where he forgets what we just talked about, as much as I love him I found myself being really impatent. we were able to talk about it and came up with a easy solution and it really helps. We have a small note pad and just write down what we spoke about. A Little thing helps so much.

    - Peggy

  • March 24, 2011 9:53 a.m.

    A truly moving and inspiring account. Thank you for posting it.

    - GGSA

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