Homewatch CareGivers Utah

Alzheimer's: a blessing?

I have learned so many lessons from helping mom through this journey that is Alzheimer's disease. Patience, unconditional love, kindness and forgiveness have to be learned to cope with the tragedy of Alzheimer's. What I now realize is that these are the lessons mom spent her life trying to teach me through word and example. She dedicated her life to loving her family no matter what. Her sweet disposition, her patience, kindness and love we all recognized. Yet, for me, it took these last few years of serving her to really understand what she was trying to teach.

Some might wonder why God would allow a person as beautiful in body and spirit as my mother to suffer through the indignity of Alzheimer's disease, to end up wearing diapers, unable to speak, unable to care for herself. I thank God that it happened. Mom loves me. She has always tried to teach me what to do. Yet, it wasn't until this disease had her that I really started to learn. She has taught me so much during these last few years. I am a different person, a better person, because of my mother's journey through Alzheimer's disease.

I know that, given a choice, mom would choose to suffer this way if she knew her children would benefit. "Greater love hath no man than this, that a man lay down his life for his friends." John 15:13. That's my mom.

The funeral: part of the journey

Today was mom's funeral. What a tribute to a wonderful woman. I could not believe the number of people there. Friends from years ago and relatives not seen in years where all there to pay tribute. The first person I greeted was a woman mom and dad knew at the airbase village over 50 years ago. Yet, there she was, crying and telling us how much she loved my mother. After 50 years! That's some kind of lasting influence. I always knew she was sweet and special to me. What I didn't realize is that she was the same way to everyone. The unintended theme of the funeral was played out over and over again: mom loved everyone and we all were her favorite.

The funeral was more than a tribute to mom's love and caring for all. It was also her testimony. I didn't realize until tonight as I looked back at the program how mom spoke to everyone there.

As my sisters and I prepared the program we discussed the hymns to be sung. I thought of "Joseph Smith's First Prayer." Everyone agreed. For the closing number we selected "I Believe in Christ." As I look back I realize that they aren't typical funeral songs. I see mom's hand in selecting them because they are her testimony songs, her testimony of the restoration of the gospel and of the Savior. No more fitting songs could have been chosen.

We had a wonderful day. It snowed this morning. As we left the church to go to the cemetery, the snowed had stopped and the sun was shining through parted clouds, reflecting off of the new-fallen snow. It was beautiful. When we got to the cemetery, the snow started falling again. The white blanket across the cemetery made everything look fresh and clean. It was a fitting scene to receive mom's mortal remains. I dedicated the grave and, again, the snow stopped. We could then visit and enjoy our time with family and friends. We even threw a few snowballs. (Sorry mom.) It was like mom was up there with her hand on the valve, giving us just the setting we needed at each stage. (Thanks mom.) But isn't that just like her, in the background, taking none of the glory, but really being in charge.

So, she's gone, but only in a physical sense. Her spirit lives and she is still with us. The timing of her passing is not coincidental. We can now have the big 85th birthday party dad wanted and Margaret now has a special helper in Africa. I believe that our dear departed can be sent as angels to help us in this life, and Margaret needs mom now more than we on this side of the world do. Although I am certain that mom will spend time comforting dad until they are reunited. (Dad hopes it's soon rather than later.)

I suspect we'll all continue to feel her presence and her assistance as we need it. Although her journey through mortality is over, it will continue through the eternities. She still has lots to do.

She died

On Friday, October 23, 2009 my mother died. The death was not unanticipated. She went peacefully in her sleep when no one was around. She picked a good time (if ever there is a good time) when family was already planning to come to town for dad's birthday on Wednesday. What I didn't anticipate was the difficulty telling my dad. After 60 years of marriage the love is more intense as is the grief. He wept. He sat next to mom's body and held her hand. For a time he prayed. Then he cried again. It is impossible to express the poignancy of that moment.

We'll have the funeral on Tuesday and then on Wednesday we can have the big 85th birthday party that dad wanted but said he couldn't have because of mom's health. We had planned to have a dinner at their house with just his children there so as not to disturb mom. He would not leave her to have a party. Now, we'll have a big party with everyone invited.

It seems appropriate to celebrate mom's life, while celebrating dad's birthday, by having her family together laughing and talking and joking around. That is her legacy, a loving family ever expanding.

She loves her husband

Mom was resting peacefully today. No more moaning. She still responds and calms when a loved one is near touching or talking with her.

Kathy and I visited a mortuary today. What a strange experience, planning for death. And what an odd business. Why would someone spend ten or twenty thousand dollars on a casket? I don't get it. Why worry about having a rubber gasket and whether the casket will seal perfectly or at all. We all go into the ground eventually. Whether we are embalmed or cremated, our ability to be resurrected does not change. I don't think the resurrection is going to be like Night of the Living Dead where you'll see people digging out of their graves. (But if they do, I'm sure they won't be trying to each brains.)

So we are going with the cheap casket. I'm sure that's what mom would want. I know for sure it's what dad wants, because he told me.

I visited with Robin Harden today. I went over to talk with Bob, the Bishop, but he wasn't there. Robin told me about an incident of a few weeks ago. She was visiting mom. Mom was still talking then, but was very uncomfortable and in pain. She shifted, laid down, sat up. Robin sat next to her and mom said, "I just want to lay down in bed with my husband." She loves dad. She just wanted to be in a comfortable place, next to her husband. I told this experience to dad and his face lit up. Dad loves mom more than I ever understood.

Who's inside?

Mom has declined to the point of not being able to communicate at all. She can't support her own weight. She eats very little, and only if someone puts food in her mouth. She took a little Ensure yesterday, not much.

Notwithstanding her apparent lack of awareness, something interesting happened. She was laying in her bed groaning. She does that much of the time. I'm sure it relates to her level of discomfort. Kathy was sitting next to the bed and answered the phone. It was Colleen calling from Colorado. Kathy put the phone to mom's ear. As soon as Colleen started to talk, mom calmed down and quit moaning. Her whole body became more restful in appearance. Within a few moments of Kathy taking the phone from her ear, mom began moaning again.

So how much understanding was there? I don't know. What I do know is that there was some level of awareness; whether that level was full awareness or not is insignificant. It demonstrates that visiting and showing my love for her through touching and talking is important to her well being. It also demonstrates that my mother is still inside, trapped in a failing body.

One might ask, what is the purpose of mom going through this? Why would God let her suffer so? There are many lessons to be learned. Perhaps she needs to learn he lesson of accepting service or seeing how much her children love her. Perhaps we each need to learn the lesson of patience and service above self. Maybe it isn't a lesson to be learned at all. Maybe dad just needs time to adjust to being without mom after 60 years together.

Dad's slowly coming to terms with the idea that he won't get her back in this life. He asked me yesterday if we could put her in the hospital so she could get better. I told him that it wouldn't help, that she isn't going to get better. We have this conversation most days. Dad's grief is the saddest part of this dying process.

Don't forget dad

I sat on the porch today talking with dad. He misses mom so much. I don't think I ever realized how much he truly loves her until recently. Obviously, love grows over time. But I think love takes on a new dimension when one is faced with the prospect of loss. Along with the awareness and closeness of love comes the grief, which is that much more intense with the loss coming a little bit every day.

Dad jokes about taking his life. He said to me the other day, "Hey, are you leaving now? Drop me off at the Jordan River, will you?" Kathy joked with him saying, "Your problem is that you can swim. You'll naturally just swim to the shore." We all laughed. Today his concern was deeper. He wasn't thinking just about his loneliness now. He said, "Do you think I'll be with her on the other side?" I asked him if he'd lived a good life, whether he was honest. He said yes. I reminded him that he had been sealed in the temple. He said, "I'm so glad that we did that." He was deeply troubled, but deeply grateful for the sealing ordinance.

I don't know what dad's judgment will be or what my own will be. I'm grateful that's not my call. I do know that in life we are each given a unique set of tools to work with. Some of us get a big set with precision instruments, some of us just get rudimentary tools. At the final judgment, it doesn't matter what we have made or how well we accomplished our tasks. It just matters that we used our tools to the best of our ability. In the parable of the talents, both of the servants who tried were invited to "enter into the joy of thy lord." I also noticed the other day while studying Lehi's dream that the love of God is represented by both the tree and the fountain of water at the other end of the path and that the rod of iron runs to both. So, no matter which direction we are headed, if we are on the path and holding to the rod, we will get to the love of God.

I love my dad. I hate to see him suffer so. As hard as it is to see mom sitting in her chair and not aware of the world around her, it is that much more difficult to see dad sitting on the porch swing knowing that he is fully aware of his isolation. I suggested to dad that maybe mom's hanging around because she wants to be there for his birthday next week. He thought it would be a good idea for them to die together after the party.

Love is her legacy

In the business of counseling those whose parents or loved ones are suffering the debilitating effects of Alzheimer's disease I always advise to live in the moment. Enjoy the time you have with your loved ones. Cherish those moments of clarity, of love, of compassion and understanding.

Mom is getting worse quickly. After getting on hospice, I have seen her go from communicating to not at all. Over a period of a week, I have witnessed daily decline. Is it the comfort drugs? I don't know. The medical professionals say no. It is typical, or at least common, for someone with Alzheimer's to have a UTI or other medical condition, then to see the Alzheimer's decline accelerate.

Mom isn't in pain any longer, at least not that we can tell. She is still delirious. She sees things, picks things up, needs to do things that we don't understand and can't see. She is in a different world. Before she quit talking altogether, she often mentioned her sister, Ethel, who she wanted to see and who needed her. Maybe that is the one truth of her current state of mind. Maybe Ethel is reaching across the great divide to help mom bridge the gap.

The last thing we know that Janice's father, Kip, said after a long time of not communicating at all, was to Peggy, Janice's mother, that his grandfather, Heber J. Grant, was coming to get him. Kip died on President Grant's birthday. We like to think that Kip was needed on the other side for the birthday party that year. I believe that the world of spirits is close at hand and, when needed, the veil is parted ever so slightly to allow comfort and compassion to flow freely through. I believe that the spirits of our departed loved ones come through to help those they love on the final steps of their journey. I believe that there is rejoicing on the other side of the veil when a son or daughter, spouse, sister, friend or loved one is ready for the final step of mortality; I don't mean ready because she is about to die, but ready because her life was well-lived and she endured to the end.

I love my mom so much. She has taught me well. I didn't always heed her counsel, but I always watched her example. I have an indelible picture of my mother kneeling by the side of her bed, probably praying about the heartache I was causing her. I never heard her speak ill of someone. She loved and supported her immediate and extended family regardless of their individual, questionable decisions. That is mom's legacy: love one another. She lived it.

As I visited with mom this week, she became progressively less responsive. She wouldn't open her eyes. She didn't talk. She's not eating or drinking much, just what her caregivers can encourage her to take. Each time I saw her, I hugged her and told her I love her. Early in the week, she hugged me back. By Friday, she didn't have much hugging strength. Yet, she was able to whisper, "I love you." I will always cherish that moment when she was able to break through the cloud that is her mind and express the one emotion that has guided her life: love.

Hospice

Mom isn't getting much better. She's not fighting or argumentative, but she still has delirium. Last night was tough for the caregiver until she discovered it was dad who kept waking mom up. He would wake her and ask if she needed to go to the bathroom. After the caregiver got mom out of the bedroom and calmed her down, dad said, "Maybe it's me who needs to go to the bathroom." So the caregiver took dad to the bathroom. He knew someone needed to go, but somehow got confused about who. Mom slept better on the couch.

We decided that hospice might be the better way to manage her care going forward. I met with the nurse and social worker from 1st Choice Hospice today. They were great. Mom wasn't. When we got there, she talked but wouldn't open her eyes. It was kind of weird. Finally I asked her to open her eyes and she did. I introduced the social worker as Jason. Mom reached out, with eyes still closed, and asked if he was "her" Jason. Then she went on to say how much she loves Jason and what a good boy he is. After she opened her eyes she knew he wasn't "her" Jason.

Jason, the social worker, asked mom many questions, including the names of her children. She got Kevin, of course, because I was there. She struggled with the girls. She first came out with Margaret. She repeated Margaret a few times, but couldn't remember the rest. Then she remembered Kathy and from that start could go down the list. For most of our visit, she just fazed in and out of consciousness. Sometimes she would try to pick up something from the floor that wasn't there. She looked for her rings on the floor, so I went over and took her hand and said, "There are your rings, Mom. I put them back on your finger." That satisfied her. When I went to leave, i bent over to kiss her goodbye and my reading glasses slipped out of my pocket onto her lap. She picked them up. When i asked for them, she said they were hers and wouldn't let me have them. I showed her her glasses and she said, "Those big glasses aren't mine. I have small glasses." A little while later, still needing my glasses, I asked her to put them on. Then I gave her her own glasses to try. Once she put on her own glasses, she didn't try to get mine back.

The nurse thinks her kidneys are failing. She has the symptoms, including swollen ankles, low urine output and itchy legs. Mom's doctor took blood last week and 1st Choice got a urine sample a couple of days ago. The nurse will gather the results of these tests and then, with the consultation of the hospice doctor, will formulate a medicine and treatment plan. Of course, hospice doesn't manage disease processes to cure them. Their focus is palliative in nature. In other words, they will do all they can to make her comfortable, but won't take steps to cure the disease. It's the beginning of the end. We'll know more after the lab work comes back.

The hardest part of this process is seeing dad sitting there. He reaches over to touch mom and try to hold her hand. He loves her dearly. I don't know what he'll do without her. Perhaps the grief will take him quickly.

delirium on dementia

Kathy and I took mom to the hospital on Saturday. We had all been experiencing mom's increased agitation and confusion. Well, it came to a head on Thursday. We tried to get a urine sample (actually the nurse did the trying), thinking it was related to a urinary tract infection, but was unsuccessful. Her doctor said to contact her again on Monday. By Saturday we decided that we needed to get her seen immediately. At the hospital, she was extremely belligerent, fighting with the nurses and trying to bite. With her hands held down, she would cough in people’s faces. You have to give her points for creativity. Once the UTI was diagnosed, she was put on an antibiotic and admitted. The first night was hard. She had to be restrained. The next day, Sunday, she just slept all day. On Monday she started coming around. She sang to dad when she saw him. By late morning, she was awake and happy. I took her home Monday. On the way home she said that she was so tired, but didn’t know that she could take a nap because of the kids. I told her the kids were gone for the day, so there wouldn’t be a problem. That calmed her down and she fell asleep in the car.

Since then, she is still more confused than she had been, but she’s happy and cooperative. This is a common response to a UTI for an elderly person with Alzheimer’s. The doctor described it as acute on chronic delirium on dementia. He said is could take a couple of weeks for the delirium to pass and mom to get back to where she had been. Because she is so extra confused, we have a caregiver spending the night. We have that planned through Sunday night, then we’ll reassess. Frankly, I don’t know if we can ever leave them alone again at night. The crazy thing is that dad is happy we have a caregiver there. It had gotten so hard for him at night with mom up and wandering about. On a happy note, mom got up last night one time and said to the caregiver that she was so happy to have family visiting.

Doctors visit

We went to the doctor today. Time to get the toenails cut. Yes, that requires a doctor. I didn't know if mom would be able to make it. She has been very tired lately; she hasn't gone out much. She did well this morning. Mom had the choice of taking her walker or her caregiver because I can't keep her and dad upright and out of trouble at the same time. She chose Lola. With the extra help, we had a fine visit.

You never know how oriented to time and place mom is. She knew last Sunday was Father's Day. Yet, sometimes she doesn't recognize fully that dad is her husband. She complains at night sometimes of having to sleep with someone. Why does she need such a large bed? she asks. When my sister answered the question on Sunday night that dad would be sleeping there too, she stated, "Well, I'm not taking off my robe then." Who knows what's going on in her mind.

She was happy today, that makes everything all right.

Mom's little boy

Mom is getting worse quickly. She slips in and out of time/place recognition. She asked me the other day where her little boy was; he should be around here someplace. I'm her little boy. Yet, now I'm more like her father.

Alzheimer's turns the table on relationships. The nurturer gets nurtured. The parent gets parented. The child takes charge. The thing that doesn't change is the love that is exchanged. Indeed, that aspect of the relationship is actually enhanced. This is a cherished time, a time for service without conditions, a time to give to the one person who gave so much to me.

This terrible disease changes everything. It changes relationships and responsibilities and time commitments. it will also change the heart. Whether that heart change is bitter or blessed is up to each individual.

Dinner is a challenge

We took dinner to mom and dad tonight. They are so appreciative. They always rave about the food. I like that part of it.

Tonight, mom finished before dad. She said that she was stuffed and couldn't eat another bite. She said she couldn't finish her salad and asked that I put it in the fridge for later. I cleared her plate and she went to sit on the couch. After dinner, dad asked for a slice of homemade apple pie, which he always asks for kind of as a joke, because he knows there isn't any apple pie. I suggested a bowl of ice cream, which he took. I asked mom if she wanted some and she said that she was too full to eat another bite. As dad ate his ice cream, I cleared the table and put the salad bowl and strawberries, which we had put in the green salad, on the coffee table near the door.

Mom saw the strawberries and asked why she didn't get any. I said they were in her salad. She said that she ate her salad and didn't get any strawberries. Janice asked if she would like some strawberries on ice cream. Yes, that sounds great. I got her ice cream. She ate about half of it and said she was stuffed, she just couldn't eat any more. She asked me to take her ice cream and put it in the freezer for later. I was doing the dishes, so I just got rid of the remaining little bit (it wouldn't keep long anyway). A few minutes later she asked where her ice cream was. She wanted strawberries and ice cream. I got her another bowl, a small portion, with strawberries. She thanked me, took a few bites and said, "I'm stuffed, I just can't eat another bite."

We just keep smiling and laughing, that's all we can do.

Pathways to Memory

Pathways to Memory is a cognitive enhancement program for those suffering from Alzheimer's disease or any other memory-impairing condition. Because Alzheimer's disease affects people differently, Pathways targets specific deficiencies. This is a great program because it works. It slows the progression of the disease and helps those suffering deal with it and interact with family and friends. It gives people back a little bit of their pre-disease lives.

One of my first Pathways clients was my mom. The difference with her was dramatic. In December of 2007 she and dad came to Sunday dinner and sat on the couch. When dinner was on the table, they came and ate. Mom spent much of her time sleeping on the couch. She didn't interact with other very much. About six weeks into the Pathways program, I noticed a difference on Sunday. Mom was up and asking what she could do to help. She washed potatoes, set the table, cleared the table. She interacted with family.

After the full 12 week program ended, we took a break. Mom then had a heart attack and spent about a week in the hospital. When she next came to dinner, there she was on the couch, not offering to help.

Within a couple of weeks, we started up Pathways again. This time it only took a couple of weeks to get mom back up and helping with Sunday dinner. It was a dramatic change.

I believe in the Pathways to Memory program. In fact, we had offered it to clients as an additional premium service. I decided it was too important not to have everyone possible take part. Last August 2008, I changed our policy to give it free to any client who wants it. I don't offer it as a stand-alone program.

Actually, that may change. We may offer it at assisted living facilities. Check out my next post.

Pathways study

On March 23, 2009, we started a Pathways to Memory program at Sunrise Assisted Living, Sandy Utah with the support of the Alzheimer’s Association of Utah. The study lasted six weeks. It involved residents living in the Reminiscence Unit (Rem), which is the Alzheimer’s lock down unit, and in Assisted Living (AL). On April 16, 2009 (about four weeks into the study) we had a meeting with some of the family members and staff of Sunrise to discuss how things were going. Following are the comments made by family members, staff at Sunrise who are working with the residents on a daily basis and our Pathways Partners:

Barbara D. (80, AL)
Barbara has been more calm and cooperative at 3:00 socials; her social interaction has improved. Barbara came to get her nails done for the 1st time ever. – Staff.

Betty G. (77, Rem)
1. Major – my mother is now cooperative in bathing. 2. My mother is more cooperative over all. 3. My mother is usually very uncooperative when I take her to the doctor. She was much better today. 4. Anxiety has gone down. 5. Seems more content. – Son. (The son also told me that he feels less guilty about not spending more time with his mother because he knows she is now so much happier and more involved in the community.)

Less hostile situations – very pleasant attitude majority of time. Responds well with direct answers and being cognitive. – Staff.

Beverly T. (78, Rem)
Participating more; anxiety is maybe a bit less; memory, no clear picture of improvement. – Husband.

Beverly is more independent using the restroom. – Staff.

Beverly has been more calm and a lot less timid. She isn’t so afraid to use the bathroom with verbal cues. She is remembering other residents’ names and interacting more with them. She has been joking with them and very engaged both one on one and in a group. – Staff.

Jean and Bev get along very well. They talked for a good hour or hour and a half. They helped each other out with lunch. – Staff. (These two residents had not interacted previously.)

Beverly H. (81, AL)
Housekeeper mentioned that she is much easier to work with. Doesn’t complain as much and is more pleasant. Used to complain constantly. – Pathways Partner.

Floyd H. (85, Rem)
More outgoing. Talkative and physical “conditioning.” - Son (The son talked about Floyd walking without his walker and being more stable on his feet.)

He is a lot more talkative and more alert. He is happier. Deb (the Reminiscence Unit manager) said he did “Karaoke” and got everyone up and going. Not so anxious. – Daughter.

Floyd has really blossomed. He is more involved in activities where before he isolated himself in his room. Floyd and I had a 30 minute conversation which was completely coherent. I believe Floyd is more engaged and involved all the time. When I invite Floyd to activities, he is happy to join us. – Staff.

George K. (91, AL)
Wants to keep the program going. Asks caregiver if she will continue with him after the study is done. – Staff.

Jack D. (92, Rem)
Jack has been seeking more interaction, he comes out of his room ready to talk and participate in activities. – Staff.

Very cognitive with one on one situations. – Staff.

Cooperative showering. – Staff.

Jean A (81, Rem)
The people involved in Pathways recognize each other, sit together and have a sense of community. For example, Jean was having a rough day, and Nelson, Wayne and Ron all sat beside her and comforted her. She told them how much she appreciated their support. – Staff.

Beverly and Jean get along very well. They enjoy talking to each other and helping each other out with meals. – Staff.

Nelson L. (82, Rem)
Cognitive abilities, especially one on one, are much better. Can answer and respond to questions and situations while understanding and being focused. – Staff.

Ronald P. (85, Rem)
Refused to participate directly in Pathways, but will engage in the common room as Barbara works with others. Is more social now. He now interacts with the other Pathways clients. He is going on outings now. Prior to starting Pathways, he spent most of the time in his room. – Pathways Partner.

Ruth F. (84, AL)
Ruth has been less agitated at dinner time – before she would refuse all menu items. Ruth has been calmer and more cooperative. – Staff.

Viola K. (86, AL)
Viola is more talkative and responsive – usually she is quiet. She is now able to refuse items on the menu that she does not want, which she did not do before. Viola has overall been more vocal about her needs. Viola has been more assertive in telling care managers she wants to attend activities – even if her husband disagrees. – Staff.

Wayne R. (85, Rem)
I’ve seen some improvement in my Dad’s ability to carry on a conversation. He is very aware of what is happening. Problem solving seems improved. –Daughter

Wayne has been very compassionate and reaching out to other residents in the community. He seems more happy and less anxious. – Staff.

My Dad

By the way, I took dad to the doctor last week. He was diagnosed with Alzheimer's as well. I'm having a hard time adjusting to this. It took a while, a long while, to train myself how to respond to mom's incessant questions. Now I have to have that same patience and understanding with dad.

Going to the hospital

Last week I took mom to the hospital. That's a difficult job. So much waiting is hard on her. Add to that unfamiliar and scary surroundings and you have a recipe for confusion.

We got to the ER and were immediately taken back. Mom's heart rate had dipped dangerously low. She was hooked up to monitoring equipment and an IV; then we were left alone. After about a half hour mom started commenting on how no one had come to see her. She asked, "Do they even know we're here?" This comment notwithstanding all of the tubes and wires connected to her. Then she started in on complaining that she had been there all day and they had not brought her anything to eat. She had eaten lunch just before we went to the hospital, about an hour before.

The strangest thing was her repeated questions about whether I had given them her real name. She whispered to me, "I don't have any money to pay for this. Did you give them my real name." When i responded that I had, she said, "Why did you do that?" Then she asked if the cops were coming after me and if we could sneak out without paying. I don't remember how she said it, but she thought I was a criminal and wanted by the police. It was weird.

They sent us out with a 24 hour heart monitor. Yeah, right. I was to pick it up the next day. When I got there, she already had it off. I learned later that it didn't last two hours on her. As soon as she was alone with dad, she took it off.

She has good days and bad. With structured routine, her days are better. Going to the doctor or hospital always throws her off.

History

My mom's journey through Alzheimer's disease started several years ago. Actually, her journey with Alzheimer's started before she got it. Her sister had this terrible disease before mom. Mom used to visit her at a care center. Sometimes her sister would recognize mom, most time not. Eventually her sister died from the disease. Her body slowly shut down, one system at a time until she couldn't eat, then swallow, then breathe.

Sometimes now mom mentions she hasn't seen her sister for some time and suggests she would like to visit. One of blessings of Alzheimer's is forgetting the pain. The corollary blessing is experiencing the same joy over and over again. One day I visited with mom in the house. When other family members arrived I went outside. A little while later mom came outside and saw me. She exclaimed, "Why didn't you tell me you were here?" She was happy to see my all over again.

The pain of Alzheimer's comes not to the person with the disease, but to the loved ones of that person. Seeing mom not be mom is hard. Usually I hold up OK. Focusing on the funny stories helps. One day I couldn't take it any more. I came home and put my head on my wife's shoulder and sobbed. I don't remember ever crying like that before. I felt better when I was done. I have been able to hold it in since that day.

Now for a funny story. Last Christmas after my sisters got the Christmas decorations out, mom found a Christmas card from her cousin. She had actually received the card the year before. She forgot. She showed everyone the card. it had been written by her cousin from Wales while on a mission there. Mom's mother was born in Wales. She read the card over and over and loved it again and again. One day as she showed me the card again, she looked at the envelope. She noticed the date was a year prior. She said, "Look at this, Kevin. This card took over a year to get to me. Can you believe that." Even faced with evidence of a different reality, she was not deterred from her own reality. But, that's OK because it made her happy.