Precious Last Days

Photo by Chris Noren in Hawaii

Last Thursday, June 19^th, the Hospice nurse read to me from the booklet. She saw the signs that the end-of-life was approaching and of course the Hospice policy is to make death as comfortable and humane as possible. He was dying, so gaunt, but the morphine made it so he wasn't in pain. Please understand this.  

It was time for a relaxing medicine and for morphine--every four hours. My neighbor, Kenny, who has seen deaths in his extended family in the past month, helped, giving those first doses to my husband--even coming back every four hours through the night. Another hospice nurse came out and he gave me further instructions on the medicine such as how to fill the syringes. I practiced this. After that nurse gave me confidence to administer the meds, I did--a very, very hard task for me.

Friday morning, June 20, the Hospice Home Care Aide came as usual. She is very competent but I also helped her. It helped me cry. He was awake with the bed bath and changing of the sheets and so I told my husband I loved him, Jesus loves him and there is a place in heaven, a home that Jesus has prepared for him there. He mumbled/mouthed that me loved me. This made me cry again because I was happy he communicated. My husband has been made comfortable.

Monday morning, June 23, the every four-hour alarm on my iPhone went off at 5:30 am to give hubby his medicines. Only when I woke up there was no breath and no pulse. I gave the medicine anyway just in case.  But again a warm body but no breath and no pulse. Then I called the Aqua Team of Hospice and within the hour a Hospice chaplain and a nurse came out to the house.

The nurse preformed various tasks including calling the funeral director. The chaplain let me talk. He also read from John 14:1-6 where Jesus said we should not be troubled because he was preparing a home for us in heaven. Thomas questioned this, even as every loved one questions death of a spouse.

Thomas: How can we know the way? 

How can I go through his pain of widowhood again? How can I too go to my Father in heaven?

Jesus: I am the way, and the truth, and the life; no one comes to the Father, but by me.

This is the essential good news of the Gospel. I have always known that since a child who at seven years of age remembers asking Jesus to be my Savior—my way to God. But it occurred to me that Jesus is the way to navigate the choppy waters of widowhood. His truth is in Scripture. There is life that will continue and one day I will be reunited with all my departed loved ones in heaven.

Then out of the Companion to the Lutheran Book of Worship he read this prayer:

Into your hands, O merciful Savior, we comment your servant, [my husband’s name]. Acknowledge, we humbly beseech you, a sheep of your own fold, a lamb of your own flock, a sinner of your own redeeming. Receive him into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.

After some time the black-suited funeral directors pulled up and put my husband on a gurney and brought him out of the bedroom. I had been carrying dog Ziggy, and the men stopped by Ziggy and myself. Ziggy licked my husband’s face and I kissed his cold face. Then before us they covered his head with the rest of the red cloth and brought him outside to a black van while I sobbed healing sobs. At midday the regular Hospice nurse came; she hadn’t heard the news and we hugged and grieved together. The aide who had come most morning heard the news and she came also later in the day to be with me and we grieved together. Such a wonderful team—those Aqua people. They let my husband slip gently into the arms of Jesus. He was ready.  

So how am I able to cope thirty-six hours later? Prayers of you all and Scripture.  For example, four women and I have been sending each other Scripture each day.  Georgene who regularly comments on this blog started it last year and then Betty came along. Soon there were two more, Pokeberry Mary and Kim. Here is a sample of Scripture I have been treasuring that I am meditating on now.

•   When I am overwhelmed, you alone know the way I should turn. Psalm 142:3 NLT

•   Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world. 1 Peter 4:12-13 NLT

•   You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. Psalm 139:16 NLT 

In the fourteen years of marriage with my now deceased husband, about half of them were about Alzheimer's. This blog grew along with my faith during those 7 years. I am grateful for those years. I am grateful that my husband is with the LORD now. As a Christian I have that assurance also according to 2 Corinthians 5:8 that to be absent from the body is to be present with the LORD.

Wanna Hang Out?

So now I am about to change my marital status on Facebook to “widow”, help prepare the memorial service program and bio, and begin to do grief work. I have been a widow once before and know Scripture that speaks to widowhood and those promises of our LORD to protect me.

Last night I hung out with a family from my church thoroughly enjoying the parents and the four children. I just asked them if I could come over. The youngest wore this T-shirt. 

Hanging with people and hanging with the LORD is how I will cope and heal. Scripture says he puts widows in families—even the family of the local church.

The Soul Beyond the Senses

Senses Are Changing

This is hard to write because I am grieving as I see these things happen and so are others in his family I'm sure.

Cognitive Decline. Hubby and I still talk--but mainly about daily things like does he want yogurt, Boost, ice cream or water. I point out how cute our dog is, but he doesn't respond. Last Saturday, the day before Father's Day, he didn't recognize his own adult son and daughter, his only children from his first marriage. I am sure this is hard for them. They did not allow the grandchildren to see him, favoring letting their memories of the grandfather be of happier times.

Touch. Hubby used to object to our dog licking his head and toes. However, now he doesn't object. He doesn't like the feel of my hair when I bend down to kiss him, so I try to control that hair. At times he favors the fetal position in bed, but this may be because both knees have osteoarthritis it seems and we put a pillow between them. Last several days,  however, he is on his back with his knees bent and he rubs those knees.

Sight and memory. He doesn't respond to how he looks (buck-teeth look) with upper false teeth not completely in his mouth when I show him in a mirror. At times over the past few months he hasn't recognized sights in our home. He forgot about the backyard. I have to remind him that THIS is our house. I do that often. I also tell him that someone will be with him at all times now. I can't leave without someone being here. Usually they sit on the couch in the family room and look down the hall to see him in the hospital bed. No longer am I amazed that volunteers have come forward to stay with him when I need to leave the house. This morning a fifteen year old and a 17 year old stayed with him. The younger one touched his hand and my husband smiled warmly--a definite bond. Care receivers often live in an earlier time and I wonder if he thought Esteban is his son at a younger age. 

Taste and Smell. Hubby can chew a pill but not a capsule pill so he is not getting capsule pills now. Except for sweets his taste buds are gone. At one point I was crushing all his pills and putting them in applesauce. But it would take a long time to feed him and he needs his pain medicine at special times. His nurse has him on fewer pills now. He used to take Metformin for Type Two diabetes, but doesn't need it now and I do check his glucose. Fewer pills means fewer side effects. The Namenda and Exellon Patch for Alzheimer's wasn't working any more anyway. The Hospice nurse knows the protocol for pills. I am grieving about fewer pills, but this simplified medicine seems to be working and it is the dementia that is causing his downhill spiral.  I haven't done much with smell to bring up memories, but that is a caregiver strategy to use. On the other hand he does not smell his own excrement--but I sure do!

Hearing. Still good I believe, although he isn't interested in TV as he used to be. He does respond to my voice and if something is to be done (turn him in bed), you have to tell him that or he will get upset by shaking his hands. Tell him what is to happen, repeat it and do it. Then he is not upset.

So how do I communicate with my husband? 

Smiles and simple words. Elaine Pereira, author of I Will Never Forget writes HERE: "As the brain of an Alzheimer's person deteriorates neurologically, language plummets as mumbling trumps intelligent words." He doesn't answer questions now. I am learning to interpret hubby's mumbling.  If he doesn't want some food I am hand-feeding him, he will just push it away. On occasion he will give me an angry look or push my arm to get it away. I then back off. Mainly I smile and tell myself that if the situation were reversed (I had dementia), he would do the same for me.

Feelings. My husband will start to cry and I pick up on that as I say: You feel sad. It will be okay. This calms him down. Or I pray. Before the dementia, I never saw him cry. He definitely has emotions and often he smiles. He likes when I say I am his loving wife, and once he said "thanks" when I said this. I show him my wedding rings and his which, I noticed, is now on his middle finger since he has lost weight not eating much. I appreciate that a Hospice aide must have put it on the other finger.

Music. Sunday morning I put on hymns and he seemed to enjoy this so much. We could worship together. I mentioned Revelation 5:9 to him that in Heaven we get to sing a new songs to the LORD and he nodded. If the senses and memory are changing, his soul isn't. This Christian believer is with me when I pray. He listens to heaven talk. My faith helps me not cry, but to look to heaven where there will be no more tears.

I appreciate his soul and that he 

will be in heaven one day.  

It's great that with the decline of 

the senses his soul will remain. 

I look around the house now and am grieving for all of the changes. He is confined to our bedroom and content at that. Equipment has come to a halt. No more walker, wheel chair, Geri chair, and bathroom grab rails. Just a hospital bed with my twin bed beside him. We don't eat meals together any more as I spoon feed him and give him liquids with a straw.


When the Hospice Health Care Aide came Sunday morning, this Christian lady told me our house has peace. What a compliment to our LORD to say that the house has peace! The LORD is in this place.

The LORD is my peace. Psalm 119:165 reads:

Great peace have those who love Your law,

 And nothing causes them to stumble. 

I think of the words in the old hymn, It Is Well With My Soul by Horatio G. Spafford: 

When peace like a river

attends my way,

When sorrows like sea billows roll;

Whatever my lot

You have taught me to say

It is well, it is well, with my soul.  .  .  . 

Not My Problem?

NOT MY PROBLEM? 

Romans 12:10-15 reads: 
Be kindly affectionate to one another with brotherly love, in honor giving preference to one another; 
not lagging in diligence, fervent in spirit, serving the Lord; 
rejoicing in hope, patient in tribulation, 
continuing steadfastly in prayer; 
distributing to the needs of the saints, 
given to hospitality. 
Bless those who persecute you; bless and do not curse. 
Rejoice with those who rejoice, and weep with those who weep.

There is so much physical and mental suffering out there. Some people are grieving the loss of a loved one due to disease or accidental death. So many causes to support and people to care about and pray about. Sometimes we miss that suffering and just concentrate on our own family and our own issues. We want to be happy after all. Why care about . . .

• Cancer research is a big one. Wear pink. Many times cancer research gets big bucks because people with Alzheimer's often die of other causes. Nonetheless, let's support both cancer and Alzheimer's research. 
• Problems with asbestos. Heather send me an email to feature asbestos problems HERE.
• Mental and physical abuse by others. Human trafficking. Horrible scars. 
• Loneliness.  

which can lead to

• Depression. See HERE for what you can do. 
• Autism. This can be a hard one for families. 
  

• Whooping cough. Saw this poster at the right at the mall telling us to get vaccinated. Praying for some children who have whooping cough now.
• Addictions of various sorts. I teach a class about once a month for DUI offenders and we discuss those substance addictions. 

We saw the movie "God Is Not Dead" Thursday night. A lead character has a mother with Alzheimer's in that movie. That mother didn't remember her son and daughter. In the movie the daughter was attentive, but the son wasn't. The mother loved chicken and would request it every night. My hubby is getting like that--favorite foods. I asked him about the scenes with the mother in the movie and her poor memory. He didn't remember that scene. The next morning he didn't remember the movie.

Yes, I mainly write about dementia issues here, but LORD forgive me for not caring and reaching out to others with other needs.

I do know that my husband's faith shows when his memory doesn't and he cares about issues that he sees in the moment and we can pray together in the moment. You should have heard his prayer Monday at the restaurant when we took Kenny out for his birthday. It was as if he never had vascular dementia or Alzheimer's. As Sally and I learned in an Alzheimer's workshop yesterday, the soul doesn't get Alzheimer's.



Let's remember that our ALZHEIMER'S caregiving is not the only issue out there. Above all, let's heed the call of the LORD on our lives before we get Alzheimer's or some other dementia when we cannot heed His call.

Carol

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.

Interview With a Lovely LaTane



Any One Riding Off into the Sunset?

 LaTane and I follow each other on our blogs, Google Plus and Pinterest . She accepted my friend request on Facebook Tuesday and I talked her through how to chat on Facebook.  

Carol: LaTane, thanks so much for being willing to chat. We seniors have to learn so much don't we!

LaTane: Yes, it's an entirely new world for us. I try to stay in touch with today's technology but find that I can't run as fast as I once did!!

Carol: I know. Barb (Cleaning Up the Clutter) helped me get on Pinterest, and then this last week my sister-in-law helped me adjust to an iPhone after my five year old cell phone died. But for this interview you and I have two things in common--widowhood and caregiving. I have been a widow and you are one now. I am a caregiver now and you have been one.

LaTane: Yes, and I bet if we explored it further we would have other things in common.

Carol: We both love the LORD, blogging, writing, quilts, etc.

LaTane: Yes, you got it!

Carol: You have been a widow for over a year now. How long were you a caregiver?

LaTane: About eleven years with my husband. I took care of my Mom, who had dementia, for 12 years prior to that.

Carol: Wow! Did taking care of her prepare you for hubby's situation?

LaTane: Not really. Each one was so different and in many ways you treat dementia differently. Alzheimer’s is much more complex. Also, taking care of your Mom isn't like having your spouse retreat into a dark hole. Maybe I should have used the word “disappear” instead of retreat. Retreat is a conscious effort, disappearance is not really.

Carol: “Disappear” is a good word for it. How did you notice that happening?

LaTane: A missed appointment, confusion over where we were supposed to be, forgetting things he should have known.

Carol: And it is easy to nag until you learn what Alzheimer’s is.

LaTane: I am afraid I did some of that nagging. I expected to have Elbert by my side until we rode off into the sunset together, with him being that strong and capable man that he was. The tables were turning and I was scared.

Carol: I know I miss that strength from my husband now and I have to learn a new language just to simply be able to communicate and to be responsible for so much.

LaTane: Having to take on the entire responsibility for the two of you is very difficult. You are getting older, have less energy and now you have it all to do. And, let's face it-- men do some things better than women!!

Carol: I had that as a widow also. I went through Hurricane Andrew with my late husband and then every time something would come up after he died (insurance, fixing something around the house, mowing the lawn) the grieving would be painful in another way.

LaTane: In my generation the man assumed the role as head of the household (with me as his partner). It just felt odd to have to make every decision by myself. But, I had a very supportive family to help me through all that.

Carol: Did you have any role models for being your mother’s and husband’s caregiver or did you learn and blog as it went along? Was navigating all the insurance and medical decisions hard for both mom and hubby?

LaTane: That is one thing I am having so much trouble figuring out-- all these companies and stuff that Elbert took care of. My brain is so overloaded. Mother was easy. But, when I knew that we would have a lot of decisions to make (and before Elbert got too bad) we went to an elder law attorney who guided us through so much of the legal tangles that we would face. A couple of our children were involved in every aspect of that. I will say it helped so much to have a professional in our corner. We also had a very knowledgeable family services director who was always there for us.

Carol: Did your late husband have trouble with driving, hallucinating, anger issues?

LaTane: Elbert was a very calm person in the real world and I am so thankful that he, for the most part, remained calm and nonviolent. He was easy to care for in that respect but he would want to “go home” and after his getting out of the house and down the street in the middle of the night more than once we installed alarms on the outside doors. These can be bought at Lowe's for a small amount and alerts you when the door opens.

Carol: Good tip and I think there is also an Alzheimer’s store that where you can buy such items.

LaTane: He spent nearly two years falling several times a day and that was my main task--keeping him off of the floor. Someone had to be with him at all times because he did not remember not to get out of his chair without help. That was a very stressful time. After that length of time his doctor decided that he was having seizures which caused the falls.

Carol: Then came the nursing home I would imagine. I read about that on your blog which I religiously followed.

LaTane: Yes, and, that was a very difficult decision. Tore our hearts out but I just could not continue on with his care.

Carol: Did you have to trick him to get him to move? And how did the elder law attorney help with this?

LaTane: We investigated several places which I suggest everyone do. After the choice was made my daughter and I took him to meet with the director and also to familiarize him with what could be his new surroundings. Later, after his room was set up and all his clothes in place we took him, visited with him in the room and then the director brought in another resident who had similar interest to distract Elbert. The family left and I really do not think he ever realized where he was.

Carol: So interesting that he recognized it as his home with his things.

LaTane: His first home away from home was an Alzheimer’s wing in an assisted living facility. A bit more upbeat, more like home situation which made it easier I think.

Carol: So you were now on road to being a widow and yet married when he left your home you both had shared.

LaTane: Yes. You lose your loved one to Alzheimer’s long before they pass away.

Carol: I know this is what my fate is. I do not know how to prepare for it.

LaTane: Your role as caregiver becomes your main focus, your existence. You do whatever you must in order to make their days (and yours) as comfortable as possible. That becomes your full time job. I must add that there are sweet moments of tenderness, of love, of hugs. You learn to cherish those beyond measure.
Carol: Oh yes I am cherishing each good day we have. I however just challenged DH to finish his breakfast, take his pills and scolded the dog for not eating also!

LaTane: That's funny... poor little doggie!

Carol: I talked to the dog and now he is beside me. Both the dog and the husband here do not understand me! However, I am still able to work outside the home.
LaTane: I do not know how women still work (or men if their wives have AD). It's such a challenge without a full time job.

Carol: I am working to pay off credit cards so I can stay home one day when I have to. Also substituting and teaching classes for DUI offenders are a sort of break.

LaTane: Oh yes, we all need those breaks.

Carol: Did you get any breaks and did you feel guilty when you took a break?

LaTane: I finally found a woman who would sit with Elbert when I went out. She was wonderful with him. I was feeling guilty to begin with but soon realized that I had to take care of myself in order to be able to take care of him. They preached that in the support group I went to.

Carol: On our subject of widowhood, I had to be babysat when I got rid of the clothes, books, etc. of my late husband.

LaTane: Was his death sudden or was his illness a long one? In my case I found that I was prepared to stack his clothes in a pile and ask someone to take them. Having him living away from home for a year and a half had to have helped my state of mind in that regard.

Carol: My late husband died very suddenly from a blood clot following surgery. Then I dated too soon when I was a widow and then had grief on top of heartbreak. You try to fill the void before your grieving is done. How are you doing with widowhood now? One of my mother-in-laws told me she didn't want to take care of some old man. Are you thinking of remarriage at all?

LaTane: I have a lot of things I am involved in. I stay busy. I meet friends for lunch. I had a few months counseling which helped. It's a long process. Don't rush yourself. Just face each morning when the sun comes up.

Carol: I had counseling also and went to a widow support group. My counselor asked me, Why are you in such a hurry to replace your husband, Carol.

LaTane: I don't think I will ever be ready for marriage. I said I would never get involved with someone, I love being alone too much. But, I realized I really missed the companionship that a man provides. I do date some. I appreciate anyone for showing kindness.

Carol: The Scriptures tell younger widows to remarry, not older ones.

LaTane: Hey, where is that Scripture?

Carol: I Timothy 5:14 and there may be room for interpretation here, I think it is both good and controversial when older people marry. The thing is you are so vulnerable as a widow. It took me a long time to marry another Christian—I was 55 when I remarried. I am glad I can be his wife/caregiver now. It is my marriage commitment.

LaTane: See, I don't think I am in that place in my life that I can go there. I wonder sometimes if I am just searching for what I had.

Carol: The best, Heaven, is yet to come.

LaTane: Amen to that!

Carol: I am envious of people who are almost there often (Heaven), yet live to hear my LORD say, "Well done, thou good and faithful servant." Well, LaTane, you have a cold and need to take care of yourself. I am very grateful that you have shared this experience. Hugs and prayers as always and look forward to maybe meeting you this side of Heaven.

LaTane: You have been great interviewing me, drawing me out.
Carol:  “TTYL” as the young people write!

LaTane:  I know your journey is fairly new and I pray for peace and guidance for you in the days and years to come. Bye for now!

"When the Parent Becomes the Child"



From Pinterest Group Alzheimer's Board

Greg Asimkaupoulos is a pastor who writes thoughtful and funny poems. He gave me permission to post this poem here on this blog and another thoughtful one follows.

When the Parent Becomes the Child

by Greg Asimakoupoulos
July 13, 2012

When I was but a boy of three,
my mother took good care of me.
She cooked my food and washed my clothes
and dressed me for the day.

She helped me tie my laces tight

and tucked me in my bed at night.

She put my needs ahead of hers

and never once complained.

When I fell down or lost my way,
my mom was never far away.
She recognized my helpless state
and made me feel secure.

But now my mom's "the child" in need

who struggles daily to succeed

at little tasks that tax a mind

that frequently forgets.

She needs my help to get around
or look for things until they?re found.
And when her eyes betray her fear,
I hold her trembling hand.

At times her needs can drain me dry,

but when I start complaining why?

I think back to my childhood

and how she cared for me.

Originally published at http://www.partialobserver.com/ . Used by permission.

For Dolores, Special Plant City Friend from Texas

My blogging friend from Texas who has written on Plant City Lady and Friends, is going through rough times now with her David in a nursing home and not recognizing her. She is lonely.

I have been a widow and grieve with her as she begins the process of grieving while her husband is still alive. She likes large letters so here is what I wrote in a comment on her blog and am reposting here:

Dolores,

Your blog is such good therapy for you and for all of us grieving with you. "Bear one another's burdens," the Scripture says.

I reflect on my grief with my late husband's death twenty some years ago. It was so hard and a counselor helped me through. "Why are you so anxious to replace your husband?" he once asked me when I started dating another widower only four months after my late husband's death. I did heal and learn. It took eight years to remarry a godly, attentive husband, who is still godly and attentive despite his Alhzeimer's.


One session those many years ago, after working through much grief, the counselor said to me, "Get up each morning and pretend you are happy." Pretend? I'm thinking, but I didn't feel happy. Crying out to God and emersing myself in Scripture I did get through that stage and the years to follow. I repainted rooms in the house and forged a new life without a husband. I learned to live singlely.

Years later when the Alzheimer's diagnosis came to my current husband, I thought about the hard times of facing widowhood again.

Enter one lovely DOLORES who taught me to treasure every day with my husband with your comments on my blog. I do treasure every day now, as I pray earnestly for you to be given a "spot of joy" (husband's recent term) each day.

I am so grately for you and your blog, dear Internet blogging friend. I am one of the WHYS for what you are going through.

Hugs and prayers,


Carol