Later Stage Caregiver Laurie's Interview

Laurie’s husband, Gary, has Early Onset Alzheimer’s and is in a later stage than my husband is. We chatted on Facebook on October 15th and several times during that interview Laurie needed to attend to situations at home with her husband or an outside caregiver. I interviewed Laurie to learn from her for my road ahead and also to share our Christian faith.

Carol: Laurie, your blog, “I Have Been Young”, is so awesome. When did you start your blog?
Laurie: I started it in 2010. I've enjoyed it, but lately with all the transitions, I've been slow to get new posts done. I'm going to merge it with my website for my watercolor business. I am almost ready to have the new website published. Just working out the "kinks". I'll announce it on my blog when ready.
Carol: I love the last one with marriage pictures and all your sentiments. I pinned that on Pinterest into the Alzheimer’s section and noticed repins for you.
Laurie: Thank you I enjoyed looking at the photos of our wedding in that post too!
Carol: You created a digital box for your husband that got his attention. Does he still like that?
Laurie: He sees the digital frame rotating the photos while he is at the breakfast bar each morning. They are currently all photos from his childhood and teen years. Sometimes he seems to zero in on one, but it's not consistent. He especially notices the ones of the family ski-boat.
Carol: Communication by pictures when words don't work so well I guess!
Laurie: Yes. I assume he understands, or that at least they look familiar. Somewhere deep in his mind's long term memory, perhaps he remembers the waterskiing days.
Carol: Does the routine keep him focused?
Laurie: I'm not sure because the "focused" moments are so random now. I think the routine helps in other ways, like physically. His body is not "thrown off" by too many changes. But I try to balance that with what he used to like--lots of variety within the routine--different views, objects to handle, etc.
Carol: This takes a lot or coordination on your part. For my husband the routines don't bring up a noticeable difference until something like my hospitalization shows his decline. My husband is happy to be home and doesn't remember my being in the hospital now. What kind of changes became hard to bear for you?
Laurie: The need for so much more "in home" care has been a big adjustment. I must say that it is a very good thing (and necessary) to get so much more help, but it comes with a price. I have to release more and more of Gary's relationship with me to others. It's hard to describe this, but the random moments of connectedness are now sometimes experienced by him with others, rather than with him and me. I love knowing that they get to "connect" with him, and that he is enjoying himself, but I miss him and it's hard to share him. On the other hand, if I'm going to keep him at home, it is imperative to get more help, because I have a weak back and the Lord reminded me this weekend that I need to share the load with others.
Carol: It sounds like anticipatory grief kicking in to release Gary to the care of others.
Laurie: It is, and in a way. The Alzheimer’s disease gives us the time to adjust and as we greet each new situation, we learn and grow. As Dolores [another blogger] said, "Life goes on." It's not easy but it's best and we trust God.
Carol: Trusting God! Yes! “I Have Been Young” is your blog title and is a biblical quote from Psalm 37:25. I gain so much from reading how the LORD sustains you. How is the new schedule working out?
Laurie: The schedule is falling into place. We have about half of it figured out, and I still need someone for a couple of other days. I don't get someone all day, just during the most strenuous parts. I have had some "random" caregivers, here and there, and then our regular ones too. I want to fill in the other hours with "regulars" so they can get used to us, and vice versa, so am praying for direction on just the right person.
Carol: Hurting your back necessitated more help for you. How did you hurt your back?
Laurie: I hurt my back while helping Gary keep from falling the first time, He was losing his balance, on the slope of our driveway. The next time I don't remember, but Saturday I was loading a wheelchair into the car in a different place, and oopsie! My back! If I were to be hospitalized because of my back, I would call on good friends who live nearby to come right away in an emergency; then our regular caregivers to add extra hours if possible and get more caregivers to fill in the blank spots.
Carol: Like you I love the caregiving examples of Ken Tada and Robertson McQuilkin (A Promise Kept). We both value our marriage commitment. Are you in a support group or do you have specific people/elders behind you?
Laurie: We actually started a support ministry for Alzheimer’s/dementia folks in our church. It is a large church so there are a number of families affected by it. It's been going a couple of years now, and the elders are very supportive. We have a pastor of special ministries for the disabled, so he oversees us. I love going! We are also very involved in a neighborhood Bible study through our church. They have been incredibly encouraging and helpful to us. They even take turns staying with Gary now so I can attend. It's too hard for him to go now because he gets too tired.
Carol: I love how you chronicle your husband's prayers. We pray each night also. Sometimes my husband's missing neurons cause impatience and swearing. Then hubby forgets about it. Does Gary show anger? Anger in a wonderful Christian husband? I see it in mine.
Laurie: They get frustrated. Gary doesn't show it if he is. As believers, we want to please the Lord. We "buffet our bodies" and try to obey, because we believe God and want to serve Him with our lives. This is not easy, and when our minds are not healthy, and unable to process, and reason, it seems logical that unwanted behaviors come out. The soul is alive and well, but the mind is broken, so thankfully, for those who are saved and in the arms of God, He sees them in the righteousness of Jesus, and understands. We need to try to correct the sinful behavior, and redirect them to think about something else, remind them of the truths they may remember, and try to understand that they have less ways to handle their frustrations. I think sometimes that instead of anger outbursts, Gary gets even more withdrawn as a way to cope with frustration, or discomfort or confusion.
Carol: The book we both like, Blame It on The Brain, helps.
Laurie: I love that book. It's practical and helps sort out the sin from the disease. I wrote a blog post about that topic...I think it's called "Be Careful Little Eyes What You See"
Carol: Excellent. I will check that out. Is that blog post under lessons?
Laurie: Yes the blog post is under "lessons" December 12, 2011 here.
Carol: We ourselves as caregivers also have our own sin nature we. We both try to be superwomen and we can’t be that woman. You learned from Seven Habits of Effective People and I am trying to learn from The House That Cleans Itself so I can be there more fully for hubby at a later stage. How does the urgent, not urgent, important, not important grid work for a caregiver such as yourself? Does the painting get put into the not so important category?



Laurie: I need to move the painting from the "important not urgent" category, to the "important AND urgent" category since I'm trying to grow my business. Having more help will allow that, I'm thinking.
Carol: Is it hard to have people come into the home to help now?
Laurie: We are used to having people in and out of our home for different reasons. For many years Gary and I helped in our College ministry at church so our house was always being used for various events. The last 3 years before Gary got sick we had Seminary students renting rooms from us, so nice young men were around coming and going. So in that way, we are prepared. BUT I do like my privacy somewhat, but am setting it aside again for this season in our lives. It's necessary.
Carol: How have you simplified your house? I notice you will have to put a ramp in.
Laurie: The ramps are all installed, and working fine. We put tile and laminate where there was carpet a few years ago, knowing that would be helpful for Gary in a wheel chair. Other than that I haven't done too many things. Just getting some equipment that helps. I'm waiting on a "power lift chair" that will help him stand up, to save our backs!
Carol: One can get swallowed up in caregiving and we are told to take care of ourselves. I almost felt guilty in the hospital when I felt better and wasn't caregiving and working on the house. Hard to relax at times.
Laurie: Lately I've been thinking in terms of "pacing" myself for the long journey ahead. Gary is in the advanced stage, but in fairly good health otherwise, and like I said, if I'm going to have him with me, here at home, I need to be a good steward of my own body, emotions, and soul. (Well God is the steward of my soul ultimately, but you know what I mean.) So relaxing, and things like an occasional "cruise" with your sis, are good things to do! At least your recent hospitalization wasn't from a heart Attack!
Carol: That would have been worse for sure. Today he doesn't remember I was in the hospital, but is content to be in the family room watching TV while I am here in my almost clean den on the computer interviewing you. At first when he was diagnosed I used emotional eating and now I have that more in control. We have to change because they can't. One change that is hard at first is learning to speak Alzheimer's.
Laurie: Yes, but I think now that Gary is beyond speaking, and giving feedback that I just try to talk to him as if he understands, and then try to chat away. I just try to keep good hymns playing for part of the day and watch "benign" things on TV/movies that wouldn't be confusing. It actually helps with my own sanctification because I don't want to rely on his being able to be “discerning". In that way it is good for me. Simplifying life, and being his companion. But now, I am feeling more of a need to be well-rounded. Don't get me wrong though. I still have the occasional "melt-down." But don't we all no matter where we are in life!
Carol: All for our sanctification and growth in the Lord. People say "I don't know how you do it" and sometimes I don't handle the disease very well at all. Do you get respite time at all?
Laurie: I have respite time two days a week for five hours each day. I am gone from the house most of the time. One day is for errands and shopping and one day for friends, going to lunch or helping my parents. I am hoping to incorporate some time going to a concert, or art show, or overnight to the beach with my daughter or friend, as the caregiving time increases.
Carol: You are adjusting to more help. What else has Gary had to adjust to? Did your husband have a difficult time adjusting to not driving?
Laurie: Gary willingly surrendered his driver’s license, but I know it was hard for him. He has truly been so content with each stage. He is a good example of trusting the Lord. He has had a hard time with receiving personal care, but that's natural for anyone, I'm sure. All the same, he accepts it. As far as "adjusting" he is beyond that. He did have a hard time, not seeing his truck or garage anymore. He still turns his head when we're driving and he sees a truck like his.
Carol: Any problems with hallucinations, seeing someone else in the mirror, losing stuff, embarrassment when forgetting someone?
Laurie: I think he sees something because he reaches out to take hold of something, but it doesn't appear to be frightening. Not sure if he sees someone, and is beyond "losing things". He did get frustrated when he was in early stages with work related boo-boos and forgetting things. But that seems so long ago now.
Carol: Did Gary ever wander?
Laurie: Gary only took off a couple of times, in middle stage. Now he can’t walk unassisted, because of his balance issues. He wears a bracelet.
Carol: My hubby does too and I want to wear a caregiver bracelet now
Laurie: THAT is a very good idea. I should get one too.
Carol: What advice do you have for me for the later stages?
Laurie: I think the best thing to do to prepare for caregiving, is to introduce some outside people right now, in some small way so if/when it becomes essential, your hubby will be used to someone else being at the house, helping "you" and him. Even if it's someone who cleans, or does things in the kitchen for you for 2 hours a week, then when you have to "ramp up" the hours, or add someone else, it's more natural, and will be easier for him.
Carol: All of this is not easy, is it, Laurie!
Laurie: We live in a fallen world that is broken because of human sin. Without the Lord sustaining me, I would be given over to despair. I am a weak person who is able to come to the Lord for His strength. He is everything to me and Gary.
Carol: The Lord has promised to not give us more than we can handle. It has been a pleasure to chat with you on Facebook. I look forward to that new blog and I will link it to the right under my blogging friends.
Laurie: I’ve enjoyed this so much too, Carol. Thank you for asking me. I would love to meet you in person some day, but until then we will enjoy our cyber-friendship and it’s been a joy to spend this time talking to you. I even had my cup of coffee right with me the whole time too.