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.  .  .  . 

Hospice

OH THIS IS SO HARD!  

I AM GRIEVING.

Hospice doesn't just have to be for the last days, but maybe for days like I am having near your loved one's end. Hubby can't walk. Can't get him showered. Incontinence. I solved one very small bed sore with Vaseline, but what if they return?

Every day lately there has been decline.  Yesterday when 2:30 rolled around and hubby was soaked with his own pee and I couldn't get him out of bed, I called Hospice. Matthew from Hospice was here at from 4 pm to 6:30 pm yesterday to interview me and see my husband. He even talked with Kenny on the phone. He qualified and we are enrolled.

Yesterday before Matthew from Hospice came,  I went briefly to town. I stopped at the Plant City Senior Center to sign two forms they had called me about. I cancelled my husband's coming there again today and said for the foreseeable future I couldn't see his coming there. I went to his doctor's office to deliver pee I had saved in the refrigerator in a plastic bag from before he took the antibiotics for the UTI. They wouldn't take it--wrong container. I threw it in the trash.

I texted my pastor and family members and several family have called. My pastor texted me last night that I had done the right thing. Brenda from TN and Sherry from my church emailed me this morning.  Ruby from Australia wrote on the last post. Thanks!

It turns out hubby has a new doctor now--a Hospice physician named Dr. Adria Stephens. Hospice will cover some meds but not all--no more Exelon Patch and Namenda. These preventative medicines weren't effective anyway at his stage. Hubby won't even remember about Hospice coming to the house yesterday afternoon.

Hospice evaluated him at stage 7c. There will be a team of people that come to the house. I look forward to meeting what they call Team Aqua. They will even send a chaplain. A nurse will come every four days. A Hospice aide will bathe him. They will provide him with a hospital bed when I say so and I will buy a single bed so I can sleep by him.

This morning I had to gently let my husband down to the floor in our bathroom because I couldn't get him a few more steps to the wheel chair outside the bathroom. I placed a pillow under his head.  One phone call this morning and I had the fire department that Hospice called help me get hubby to his wheel chair and ready for the day.

I reminisce below about the last times I have had with hubby as I have carefully kept this blog and evaluated my Facebook postings.  

• In December of 2008 when I started this blog my husband was diagnosed with dementia, the umbrella term for many conditions. He was officially diagnosed with Mixed Dementia in October of 2010 and the neurologist was surprised he still dressed himself and the Byrd Institute was surprised I was giving him coconut oil (now they have a study about it). 
• It has only been within the last year that I have been selecting his clothes and doing more of the dressing. Since Thursday when I cancelled substitute teaching, he has been wearing loose jogging pants and T-shirts which he can also wear to bed as PJ's. They have to be changed when he pees through them. 
• Camping has not happened since Memorial Day of 2012. My family provided a respite cruise for me in while hubby went to Virginia to stay with his son also in 2012. We also went to Virginia for Christmas of that year. 
• The last special dates were last month as recorded HERE—April 22 a concert and April 26 a b. d. party for two sibling dogs. 
• The last movie we saw together was "God Is Not Dead" on April 3rd in Lakeland. The last anniversary we celebrated was our 14th when we went to  Carrabba’s Italian Grill Restaurant in Plant City. 
• The last time we went the chiropractor and the last time we went to a restaurant was May 7th--last Wednesday. After the chiropractor, he hobbled into the restaurant and I couldn't see that going to the chiropractor who had been helping him was effective. A lady at the next table at Sony's BBQ told me that there are straps I could get to help me get hubby up from the table--check a medical supply place, she said. Hubby was just starting an antibiotic for a DUI, but walking was not to be. Every day since the walking has declined. He has finished the antibiotic as of this morning. 

She does him good and not evil all the days of her life. 

Proverbs 31:12 

I need Hospice to accomplish that verse. I hope to "do my hubby good", concentrating on what I can do and what he can do, enjoying his smile, humor and our love for each other with more time together than if he were in a nursing home wishing to come home. Already this morning we have told each other we love each other several times. With Hospice I can probably keep hubby home until [gasp] he dies and his soul is immediately with the LORD waiting the resurrection of the body when Christ returns. Hospice is a reminder of grief, but as a Christian I do not grieve without hope. But I am going to cry. 

Tripped Up by Nouns; Another UTI

If you don't know what a noun is, see this link HERE. Or just click on here because it is fun.

I read that the nouns are the first to go with Alzheimer's patients. Now my husband's nouns, or names for things, are leaving his vocabulary. For example, when he was not walking, he asked me to write "urinal" on that thing he called a "pee jar". When I ask him to put his seat belt on in the car, it pushes the door button down. He doesn't understand the word underpants.

Tuesday he didn't understand get in the car in the garage. I came in the front door from turning off a light on the front porch and he thought that garage was out the front door. He lost his balance and fell on his right side--the side with that knee he had been having trouble with. He was tripped up by the noun "garage". He said he was fine. He sat Indian fashion on the rug. I told hubby to just sit and I would go get help to get him up from the carpet.

At the chiropractor's office

Tuesday is the day the husbands go to the Senior Center and I took a turn to take Jake and hubby to the Senior Center so that Sally could get to her appointments.  I went to get Jake at his house, a mile and a half away. Back at our house DH would not let me help him get up--Jake was ok. I called Kenny and he came over and Kenny and Jake got hubby up just in time for his 9:30 chiropractic appointment. Dr. R. said that I got him here in time to help with that problem knee. He is able to walk. But more is going on.

We happened to be at the chiropractor's office for quite some time after Dr. R. gave hubby his treatment. Kenny doesn't give hubby his pills on Tuesdays and in order to get to the appointment in time, we took the pills with us.   It was patient appreciation week and they had fruit, rolls, coffee, etc. Jake and I waited and waited in the chiropractor's office for hubby to take his pills.  Finally Donna in the office there came over and coached hubby in taking his pills and we were able to leave at 11:15. I dropped Jake and hubby off at the Plant City Senior Center, hubby going in with his walker.

Sally and I went to our monthly Tuesday Alzheimer's Association support group at First Baptist at 2 pm and then we both picked up our husbands at about 3:30.

When we got home, hubby was walking fairly well thanks to the chiropractor. However,  I knew we were in trouble. Hubby headed for the bedroom and laid down. I gave hubby his coconut oil chocolate in bed and it took until 7 pm for me to coax hubby into coming to the family room for his dinner. I think that coconut oil helped revive him.

We have been fighting some infections recently. I had an upper respiratory infection a month ago and hubby had bronchitis. But with antibiotics we were both over those illnesses. Kenny suspected a UTI on Saturday and Tuesday with all the behavior I also suspected another UTI, as hubby was not drinking enough liquid lately and he was not himself. Yesterday's stubbornness was one precursor of the UTI. Confusion also is an indication, although you don't know if it is just an Alzheimer's patient continuing to go down hill. He started to put his underpants over his head yesterday morning, obviously confused.

I was able at 4 am this morning to have hubby pee in his pee jar or urinal. I put a UTI test strip into that pee and it registered positive. I canceled my substitute job for the day so we could go to the doctor for medicine. I put that pee jar into the refrigerator to bring to the doctor. Kenny was on his volunteer duty and he came over to take meds with hubby.

The test strips and the pee jar certainly helped. The doctor's office will test the pee, but in the meanwhile did give him that same prescription he had last time. Will report back to you how he does.

Hubby Still Here and the LORD Is Already There

Thursday I prepared my husband for a date on Friday, even though he didn't realize it. I said, "Let's go out to dinner after you shower and shave." He did that. Behavior modification here. It seems one day is the same as the next day to him and even though 'shave" is on his list it doesn't always happen after I leave the house. We just went to Denny's Thursday night but then we checked out the Strawberry Festival and places to pick up a relative who was working for "Casting Crowns", a musical group playing Friday night at the festival.

Sure enough, when I came home Friday afternoon hubby had forgotten about going to the Strawberry Festival noted on his daily schedule, but he didn't have a bad beard and so was ready to go. Like clock work we picked up the relative and took him to an early dinner at Buddy Freddy's, a Plant City landmark near the Strawberry Festival grounds.

Niece's husband and myself in a cowboy hat

Boxes of strawberries picked from the fields in background

I am not sure that our cowboy hats impressed my relative, but we did have time to give him a tour of Plant City, including our home, strawberry fields, and the down town area.

Then the three of us went to the Strawberry Festival. Our relative went to set up for the concert and I went to the exhibits after my husband settled in at a warm booth with his strawberry short cake.

Amazing puzzle in exhitit

Before Alzheimer's, hubby had been able to walk around with me at the Strawberry Festival . This year he sat and had strawberry short cake while I had a little bit of time to check out exhibits. I am so over buying anything anymore and "The House That Cleans Itself" is not finished yet. Why would I want to put anything more in our home!

I  did enjoy seeing  Lakeland's Fabric Warehouse exhibit. I should explain that I am making quilts and my introduction to Fabric Warehouse several years ago at their Strawberry Festival exhibit had bumped up my ability to make quilts with a new sewing machine and with their ideas. I also liked seeing FFA (Future Farmers of America) school exhibits and since I substitute often in Agriculture I can talk about their exhibits. The school I wrote about recently won first place for their exhibit.

When I had a chance last week while substitute teaching, I re-read a helpful book, knowing that I would test out its ideas at the concert last night--that is if I could actually get my husband to the concert. It appeared touch and go. I kept checking back with him while he sat with his coffee and strawberry short cake. It was a little chilly and he thought maybe we should go home instead. I encouraged him that we came to see the 7:30 pm concert.

About 7 pm we headed for our seats. The Queen of the Strawberry Festival with her court came on stage to greet the audience and told the audience to enjoy the "worship" experience. Yes, "Casting Crowns" is a Christian group and yes, my husband, I could tell, was able to worship. Me too, after a long week or working. I wanted to know about live music and my husband's abilities to enjoy a concert, even if later he wouldn't remember it. Sure enough we had great seats near the front and were able to enjoy the concert. My husband was throughly engaged in the concert, swaying to the music and even standing to enjoy the event at times. He was warm enough (we both had hats on and a blanket for our laps). Dr. Zeisel in I'm Still Here emphasizes that the dramatic arts including older movies are so good for Alzheimer's patients.

My husband is still here!  

Also so moving to me was the messages in the songs and one song especially that

the LORD is already there

He knows the end of this Alzheimer's journey. Thank you, Casting Crowns, for a wonderful concert.



Time and Caregiving

Time has such a different feel with Alzheimer’s. Our loved ones live in the moment and visuals of what is happening recently or in the past begin to have less recognition.

Joe is a blogger friend with dementia and I regularly read his blog posts for insight into my husband’s thinking. Joe put it exactly when he wrote on Friday: time is no longer a part of my thinking or doing.

Perhaps time is one the most difficult concepts that a caregiver has to wrestle with in the beginning stages of Alzheimer’s. I observe my husband’s use of time as he tries to keep up and to keep acting normal. His Timex watch tells him not only the time, but all so the day of the week and the date. He insists on having a typed schedule for the day, but then doesn’t refer to it.

Nornal hunger signals do not get to him, but he does check his watch to see if it is time to eat. I have to tell him it is time to shower, time to shave, time to eat breakfast, time to take his pills, time to leave the house. He can then rebel when I tell him it is time to do something. For example he will say I am not taking my pills tonight and then several minutes later you might tell him it is time to take his pills and he will take them!

The caregiver is told to never argue with the loved one. You will just go round and round  Yes, they should, but no they won’t. Yes, he said he would do something, but no he is not going to. Your patience is often tested to the limit. Others do not realize the struggles you go through and you do not want to expose others to the difficulties because, I suppose, you appear like a nagging wife or are asking for help yourself. You want to preserve the good name of your loved one.You try to be wise, establish those routines and plan as best as you can. 

Since our loved ones do not have a sense of time and responsibility, you often can capitalize on the attributes that they do have. They can be occupied with what they love to do. Our Alzheimer’s friend Jake loves yard work and being occupied productively. He will not remember all he has done even when you show him visually what he accomplished, but he is very happy with the doing.

My husband will want to do what the group is doing and what his friends are doing. He absolutely loves being a dog owner. Does this sound like childish behavior? Yes. Can I treat him like a child? No. That will not go over well.

My days as a caregiver are spent “going with the flow” and "flowing" with whatever. My responsibilities have increased and bitterness can set in. However, my husband did not ask for this disease, and I am often doing the best I can under the circumstances. I cannot afford to be bitter. I just need to get better--better at managing time myself and finding opportunities to grow in my faith.

I have referred to The Daily Audio Bible on this blog and for years have been going through the Bible this way, listening and often reading along. Yesterday morning one passage was in Mark 6:30-56.  Jesus had just fed the 5000 from five loaves of bread and two fishes. Mark is interesting because of the word immediately in many verses including vs. 45.  Then immediately another emergency came up for Jesus and the disciples--it was windy on the sea. Jesus calms the sea and says in verse 50, It is I; do not be afraid. Verses 51 and 52 follow:

Then He went up into the boat to them, and the wind ceased. And they were greatly amazed in themselves beyond measure, and marveled. For they had not understood about the loaves, because their heart was hardened.

LORD, do not harden my heart. Help me understand immediately when my patience is tried that you are there to calm the seas. My husband may not do something immediately, but you are immediately there for me. Help me remember about those loaves. Do not harden my heart.

Interview of My Husband




From Pinterest

One of the reasons I appreciate Joe so much over at his blog (see Carol's blogging friends), is that he lets me know how it is for him with his Alzheimer's. Now this disease is different for everyone who has it, but Joe gives me a clue. I have reviewed his book here and here and together we worked on guidelines here.

So here is an interview of my husband on Thursday. Hubby was scheduled to go to our chiropractor because his knee  cap popped out on Monday. He even had to be wheeled into the chiropractor's office on Monday and had trouble getting off his spot on the couch later on Monday.

Today was the follow-up appointment. I came home from substitute teaching at 3:30 and said he had 45 minutes to shower and shave. 45 minutes later neither was done. He  forgot about the appointment even with gentle reminders. Finally he went into our bedroom to get ready, changing his clothes, shaving and freshening up. I called the chiropractor to say we would be late and drove him there. Next I took him for a haircut.

We went to dinner at a long-time Plant City diner, Snellgroves, across the street from the above sign.  A meal out seems to be the best way to talk with him and I wanted to interview my husband. I just got the salad bar and he got meatloaf, mashed potatoes and the salad bar, my choice for him as he always has me choose. Steaks will be too tough for him especially when we reheat the meal at home and so we have mashed potatoes and meatloaf in the frig now. Rarely does he finish a meal any more. He did eat his salad at the diner, and as usual had ice cream when he came home--legendary treat for Alzheimer's patients I am told.

At the diner he observed my pad of paper. It's for my seminary paper on caregiving, I said. It is, but it is also for this blog. He has superficial knowledge that I am doing my counseling dissertation on caregiving and no idea about this four-year-old blog. So here is the interview with DH--dear husband for short.

Thursday Night

Me: Are you aware that I am both your wife and your caregiver?

DG: Yes, if you say so. You are my wife.

Me: Do I make sense to you?

DH: Yes. (He of late often says that I don't make sense and say too much at once. I really have to be disciplined when I talk with him. The schedule on his clipboard is really a big help.)

Me: What do you like about me? (Hoping for a real romantic answer here, folks, or at least that he likes his new DVD coffee table that I wrote about the last post.)

DH: You feed me.

Me: What do you think about my insisting you take pills.

DH: It's a pain in the ass!

Me: Yes, you forgot today. (I had to leave early to substitute in high school.)

DH: You didn't put it out. (I had it out for him and reminded him when I called him at noon.)

Me: Do you like how I am working on the house. (The House That Cleans Itself series on this blog)

DH: I have no complaints on the house. (Alzheimer's patients love their own home.)

Me: Do you have any questions to ask me?

DH: No.

Me: How do you feel about having short-term memory?

DH: I don't have any problems with my memory, but I'm tired just getting out in the car. . . . I'm in the time of my life where I want everything easy.

Me: Like not camping anymore?

DH: Camping drove me nuts.

Me: Do you want to give up mowing the lawn?

DH: Maybe so.

Me: Can you teach me to use the riding lawn mower?

DH: I don't want my wife to have to mow the lawn.  It's hard for me to get out and exert myself. How old am I?

Me: 75.  Do you want me to get someone to mow the lawn now?

DH: Yes. How old am I now?

Me: 75.

DH: I'm in good health. I don't see [Jake] as much as I would like to.

Me: You were with him at the Senior Center on Tuesday.

DH: I didn't remember.

Me: You go there with him every Tuesday.

DH: I am at that point in my life where what happens happens and I don't have to remember. (I think that this is brilliant. Wish that we all had that godly contentment!)

Me: You take it as it comes.

DH: I kick back and relax! I'd be lost without you.

Me: I'd be sad without you! You are so much more important than our dog Ziggy.

DH: It's amazing how much Ziggy interacts with us That's why I've always had dogs. It would be lonely without them. (I do not believe hubby will leave our home because we don't put a leash on Ziggy to walk him. We just take him out in our large fenced back yard. Also, since the crash in 2010 we do not own two cars now.)

This Morning

Me: When we went to dinner last night, you suggested we get someone to mow the lawn.

DH: No, I can mow the lawn. It's easy just sitting on the lawn mower to mow it. (So many times he forgets what he decides. Hmmm. That lawn! Oh well, it is Area # 9 to work on here, but those weeds are growing even in winter.)

I am off to substitute teach in a middle school today.

Self-Discipline of a Caregiver

How many ways does a caregiver need to be self-disciplined?

• Live in the moment

• Listen
• Learn to say one concept at a time
• Select wise nutrition from what they will eat
• Put things back where they belong according to the Alzheimer's patient
• Be with them so they are not lonely
• Take care of own health
• Manage time well
• Carefully establish routines for loved one
• Make the house ready for later stages of Alzheimer's
• Keep up with their medicine
• Go to a support group (or have a blog)
• Arrange socialization with others
• Manage money and look to the future
• Pick out clothes to wear
• Arrange for shower or bath
• Arrange all doctor appointments
• Check for urinary tract infections
• Safety
• Simply explain the world to them
• Rejoice always

What is the job of the loved one with dementia?

• Trusting us and asking questions
• Cooperating with giving up privileges such as driving
• Accepting supervision
• Learning to have fun at whatever level possible
• Praying and worshipping
• Enjoying music
• Contributing to household tasks

Later stages can include changing adult diapers and arranging for hospice. Yes, it does sound like parenting. Roles are reversed and there may be some resentment about things changing.

In this Christmas season, I think of how God gave up His Son, Jesus Christ, so that by His grace I have access through faith to the greatest caregiver ever.   

Music Therapy

Here is a helpful link: Music Therapy for Individuals With Alzheimer's and Other Dementias

From Pinterest

Music is the universal language. I am intentionally playing such music for my husband because I understand music is the universal language for our loved ones who happen to have dementia.When we travel in our old gas guzzler car, usually I put music on in the car through the speaker from my five year old iPod. An adapter plugs right into the old cassette slot and connects to that iPod. My husband and I listen to a worship playlist on Sundays on the way to church. The Sunday that I forgot my iPod, we sang hymns all the way to church.

Like Dolores' sweet husband David, DH loves country music. Our friends Sally and Jake have also introduced us to Blue Grass music.  I love playing our piano and need to do that sometimes also so I introduce this into our routine. That is, when my carpel tunnel wrists are better. Too much computer, folks, but I am using MSM from the health food store and wearing braces on my wrists at night.

There is actually an iPod drive for old iPods to benefit Alzheimer's patients. See here. Many people have those lying around because they have smart phones now. I have resisted getting an iPhone and even stopped texting to save expenses and to save my carpel tunnel wrists.

Even though my wrists are hurting these days, my legs are not. This will be the third fall that I am walking in the Alzheimer's Association event. So is Sally and I need to start raising money. Our husbands will hang out while we walk.

Our Separate Vacations

Even before the Alzheimer's invaded our marriage we never had separate vacations. Of course there were times when hubby was in the hospital, but one can hardly call that separation a vacation. Enter respite time, breaks for caregivers. See article  here  which points out that in a survey 80% of caregivers say respite time is the number one need of caregivers. Because of the generosity of family, I had the opportunity to have respite time apart from my Alzheimer's husband.

June 22. My husband flew by himself to another area to be met by his son for a visit through July 1^st. DH’s cell phone is off and I call that home. I realize that he had already thought I was on the cruise, but it would be one and a half days until I depart. He calls back, we talk, and I take a shower. I get three calls on my cell during that shower asking "How do you open this suitcase?" I could not get through to him after that shower. I presume that he walks up two flights of steps to get his son to help him with the code to open the suitcase.

.
June 23, the next morning, I am awakened by my husband's call at 5 AM. He misses me! Did he get any sleep at all? My sister-in-law comes to Plant City and we go to Ikea in Tampa. I get a $20 on sale backpack to use as my purse when we leave the ship. Backpacks are so handy for travel and this one is a favorite color--bright pink.

June 24 hubby and I talk in the morning. My sister-in-law and I leave for Port Canaveral for a week Caribbean cruise on the Freedom of the Sea, luxury ship owned by Royal Caribbean Cruise lines. Hubby and I later talk before the ship embarks.

THERE WILL BE NO MORE CONTACT UNTIL JULY 1ST. Will he remember to wear his ties to church both Sundays? Will he forget and wear the same clothes repeatedly. Will he remember to use the plastic bag I packed for his laundry and will that laundry bag return home in his suitcase? ABOVE ALL AND MOST IMPORTANTLY WILL HE TAKE HIS PILLS TWICE A DAY? I have to leave all those cares behind. I am not paying for Internet/cell phone access on the trip. He cannot contact me about things like his suitcase.

We set sail and travel all night and the next day. I celebrate my 68th birthday with my sister-in-law Monday night, a dress formal night. We meet our lovely 5:30 PM group in the dining room; these wonderful people we will see every night if they can make it. 

From Wikipedia

     • Tuesday we were in fabulous Labadee, Haiti
     • Wednesday we were in Jamaica and got stranded when the motor to our glass bottom boat breaks.   Shortly we were rescued by another ship. "No problem", just a situation, is the Jamaican attitude.
     • Thursday we visit Grand Cayman island.
     • Friday we debark at Cozumel, Mexico.
     • Saturday is another day at sea with so much fun before we arrive back one on July 1st.

I met people in countries and on the ship to pray for. With some of them I prayed right there on the spot. God is not limited by distance. My husband was in the LORD's hands that week; his son had legal and medical documents and authority. There are other concerns in our world than a husband who has Alzheimer's and Vascular Dementia and I was able to see poverty first hand, especially in Jamaica. I know that in Mexico and Haiti there are areas beyond the tourist sections we saw. I left a pile of clothes including my fancy dinner outfit ($15 at the Goodwill) for my cabin steward that she will bring back to Jamaica and prayed with her about her daughter. You know, though, many in these poor countries may be more spiritually atuned than we in the states are.

I brought too much with me, but left some on the ship.

July 1st we carted our luggage early to customs and maybe two hours later at about 9:30 we arrived at my Plant City home. My sister-in-law left for another vacation with her family and she got home about 9:15--actually 8:15 in her time zone Sunday night. I was in time for my church--maybe ten minutes late, and I enjoyed sweet worship. I was a little sad that my husband didn't sit by my side in his usual seat at church, but his plane was scheduled to land in Tampa Sunday night.

Back home from church, my digital camera has over 130 gorgeous photos to download. E-mail at home was way over 500, including Facebook's notice that I had family and friends postings to check up on. In our house there was no water and no home phone. "No problem", just a situation. The mail will be delivered Monday.

I left to pick up my husband at the airport, receiving a message from his son that he was indeed on the plane. Excitedly, I waited to see him. When he arrived as one of the last passengers to walk up a ramp, we hug and kiss. Hubby doesn't have his shaving kit and suit jacket. A flight attendant from US Airways brings his shaving kit out to us after I ask. No jacket she says--oh well--that was a $10 Salvation Army find that does show up later wrinkled in his luggage. We go to the Olive Garden for dinner. At dinner he kept asking how long it would take to get home. Half hour, Sweetheart. Plumber to come Monday. We will also pick up our dog from the kennel on Monday. I keep repeating this information, one thought at a time, and hubby is reassured there is no problem. We are both so happy to see each other. He loved being with his family, but couldn't remember all the details. A grandson thoughtfully posted pictures of his vacation on Facebook.

Today the plumber came and cleared a box of spider webs by the main well and so water was restored. How weird is that! Thursday the phone company will be here for our land line. Just two situations.

Reflections. I have a tan and didn't gain weight. I have been waiting on hubby almost hand and foot, but the ship waiter pulled out my chair and put my napkin in my lap. Waiters with various accents robustly sang "Happy Birthday" to me on my birthday. I got to go to a workshop on nutrition where the speaker said she takes one tablespoon of coconut oil each day. I went to two workshops on napkin folding. About three mornings I walked for 30 minutes. Every night I went to entertainment including ice skating. I am still reflecting on the cruise--wonderful for me. Things don't seem so burdensome at home now because I had been pampered all week. I just relaxed about no water on Sunday.

Special thanks to my husband's family and my family for making this trip possible.

Shot of Joy

Thanks so much for you who pray!

Yesterday I booked no sub jobs so I could be with my husband. I also got important work done at home and then in the afternoon we went out on errands. We went into Brandon to go to Macy’s so I could buy a wedding gift for my friend Barb in Minnesota. Then we went to Sweet Tomatoes for dinner. This time my husband didn’t major on the “where’s the beef” rant at Sweet Tomatoes and enjoyed the chicken from the chunky chicken noodle soup. I could stick to my Weight Watcher’s diet also.

As we were walking hand in hand to the car to go home, I noticed something dripping under the Ford Expedition, our only car since the crash of the newer Saturn with a DUI driver in December of 2010 written up earlier on this blog.  When we turned on the air conditioner, there was a horrible smell. We kept the air off and drove home safely without smoke or needles on the dashboard going bonkers.

Now my husband can obsess about something in the middle of the night and this can disturb my sleep. Fortunately when he did so Monday night, I was still able to function on Tuesday when I substituted. However, last night it was me who was not sleeping, and needing to work today. At one point I found that he was awake and I asked him a question, as if wanting back my old husband without Alzheimer's who could make decisions about car repair.

“Should I cancel substitute teaching so I can bring our one car in?”

“What’s wrong with the car?” I tell him about the water leaking when we left dinner last night.

“Yes, go ahead.”

I get up and get on the computer and cancel the job due to car trouble. I turn off the alarm, return to bed, and to try to sleep.

“What is the problem with the water?” he asks, interrupting my sleep. “Don’t we have enough?”

“Sweetheart, it is not the well water pump or the water to the house this time. It is the car that was leaking last night.”

We were able to sleep in to 8:00 am but I got up worried about getting the car repaired. I worry while doing all my familiar morning routines of feeding the dog, letting him outside and getting breakfast and lunch ready for both of us. While I am doing all of this, my husband keeps asking what the plan is for the day. It’s on the clipboard, but I remind him as if he is asking for the first time, not the fourth or fifth time.

My first car trouble. There was a time in college when I used a family car to get to my student teaching assignment; I froze the engine on our "senior sneak" with girls friends in the car and I remember this experience to this day. Other guy students had to pick us up and the car had to be towed to town. I remember my naiveté about cars and the generosity of my parents who in 1965 paid $300 to fix that car.

Surely I could destroy the whole engine again today on my way to getting it fixed as I had in college. And it wouldn't be that cheap to get it fixed!

DH prayed for me before I left and he said, “Lord, give Carol a shot of joy.” Knowing that our great God can answer prayers even of someone with dementia I left the house. I passed a field off workers picking green peppers. Soon I saw a yard sale with so many items I wondered if the family had emptied out their whole house. I drove the five plus miles to our Plant City Ford dealer and didn’t have to call AAA. Thank you, LORD!

A sign at the Ford dealer said “free inspection”. I explained more than they needed to know about me and Alzheimer’s and why our one car needed to work so that I could pick up extra jobs. I was cordially seated at a desk where I could work. I plugged in my Nook so I could power it up to read my morning devotions  from the reading version of the Daily Audio Bible. I plugged in my notebook computer so I could write this blog. THE SHOT OF JOY WAS COMING!

With my Nook recharged I read the Prayer for April 26 from the NIV Passages Bible

Lord, I ask you to renew my mind. Holy Spirit, please guide me so that I can find wisdom. I pray for the wisdom that can come only from your counsel and through a deep, abiding love for you. Guide my steps so that the kingdom may advance through me. I want to be a person of your Word through prayer and action. Amen.

Then I continued reading from Judges 6:1-40. The Lord has sent the Israelites a prophet to remind them that they have not been following Him. Nonetheless the Lord tells complaining Gideon to go in the strength you have (vs. 14) and I will be with you (vs.16). Gideon starts obeying even taking down the altars of Baal. Nonetheless he needs a fleece; it is wet one night and dry the next night while the ground around is the opposite both nights. Sometimes I need that reassurance of a fleece as well.

Next came my reading from Luke 22:54-23:12. Peter denies the LORD and Jesus is brought before Pilate and then Herod. Interesting verse (23:12) I hadn’t noticed: That day Herod and Pilate became friends—before this they had been enemies. Even though I have read/listened to the Bible every year for several years now, I had not noticed that interesting verse before.

Meanwhile Service Consultant Kent comes and tells me the problem is that a water pump needs replacing. They are ordering that part which will come in tomorrow morning and will work on the Expedition tomorrow and give me a ride home today.  Kent says something that makes me believe he is a Christian and I hear that he became one in his 30’s, his grandmother having prayed for him for years, never knowing on earth the fruit of her prayers. I lead him in prayer for his mom who is depressed now and write down that I will pray for her once a week. Another shot of joy!

Next I read from Psalm 95 and 96 and Proverbs 14:5,6 in my Nook.

• Come, let us sing for joy to the LORD; let us shout aloud to the Rock off our salvation (Ps. 95:1)
• Sing to the LORD a new song; sing to the LORD, all the earth (Ps. 96:1).
• Let all the trees of the forest sing for joy (Ps. 96:12).

A shot of joy for me--what my husband prayed for!  I get a ride home from James at the dealer. Of course I say home James. When I got home DH has forgotten about the car and where I have been but he is happy to see me. I thank him for his prayers this morning.  I can't substitute tomorrow because the car will be in the shop, but somehow I believe that the LORD will provide for our needs iincluding this car repair.

Added the next day (4/27). A day home with hubby and no car. It was so confusing to hubby especially in the afternoon. Lots of questions. What had happened to that car that he loves and now I drive when we go out? I call it the gas guzzler, but he loves being chauffeured around in it--says it is his favorite car ever.  His questions include how did we get home. Hubby even suggested that he should have handled this repair although I realized that his thinking was confused and it would be hard for him to handle.

The dealer called and said that it is the radiator rather than the water pump and they were working to get our car back that very day. They found the part in a warehouse so that it wouldn't be next week. The repair was much less expensive than anticipated and James picked us up about 4:30 and drove us back to Ford to pay for and get the car. All in all it was wonderful working with Kent and his crew. Thank you, LORD, for this shot of joy experience.

After we picked up the car we went to a movie, "Lucky One". This movie was one that my husband could comprehend, we both enjoyed and it had dogs in it! I reflected how simple our life is now, and how confusing for DH if one element, such as a car, is missing.

Activities for Alzheimer's Patients

Kay Paggi at this article writes:

“I believe activities are crucial to well-being. In the past ten years, research has shown that activities play a large part in preventing the progression of dementia. We also know that socializing prevents loneliness, despair and suicidal thoughts.”

My husband can enjoy a lot of sedimentary activities. He does need a pillow to sit on however. We even have one in the car. He is happy as long as his butt doesn't hurt, but he complains a lot if his butt hurts. Walking up steps strains him and he walks slowly. About a month ago he sat in a department store while I shopped. We should have taken that car pillow in because he was verrrry angry at how long it took me to buy something that was on sale. I did think a lot about the purchase, because our funds are limited.

So here is a rundown of last week's activities, while four and a half days I worked.

Sundays are full of church activities. We have a worship service and then most of us eat the noon meal we bring at our small church. Once a month it is a shared meal where we all contribute, but the rest of the time we bring out own meals. Sunday afternoon we have a counseling class that I have to attend since I am working on a seminary counseling degree. DH sits in a comfortable chair during that class.

Monday we went to a church seniors group where we ate the lunch we brought and watched the movie, "Courageous". We have this event once a month and I don't substitute teach that day so we can attend that event. Sally and Jake also went, but Jake had trouble with the movie. He said to Sally later, "Why would they show a movie at our church where a daughter died?" They did not see the whole movie.

Tuesday morning my husband had a doctor's appointment. I will brought up our need to have a neurologist, as Dr. Raj is no longer in our insurance group. The doctor said a neurologist is not needed at this time. Also, my husband's numbers were very good, dispelling thoughts that coconut oil is not good for a heart patient. No need for a cardiologist for a stress test he also said.

Tuesday afternoon  through Friday I substituted in public schools. When I retired from teaching, I did not realize my husband would have two kinds of dementia.

Wednesday night we went to Toastmasters where he is often asked to give the invocation at the beginning of the evening. He kept alert the whole meeting and loves to accompany me wherever I think I need to go for my safety. He knows and likes the people in the group.

Friday night we ate out with Jake and Sally at Applebees. They have 2 for $20 meals and Sally and I shared the spinach dip and chips and my hubby and Jake shared the cheese appetizers before our entrées. Jake and DH had the small ice cream cups for dessert. Then we were invited over to their home for decaf and to see the progress they had made organizing their home.  I called Sally and complimented her today on all they had done. She usually works only one day a week, and Jake is more dependent upon her. Jake is more ambitious than my husband, however, and they can work on home projects together.

Saturday I taught the first half of a class for DUI offenders in Florida. I have been teaching these classes part-time for maybe eight years. Now hubby got dressed up a little so we could go to a movie and dinner. We end up seeing "1000 Words" when "Hunger Games" was sold outl He didn't like the "1000 Words" movie.

Unlike Jake, hubby is self-sufficient while I am gone, because of his check list. He is getting better at putting in his false teeth in the morning so that I can leave knowing he has had breakfast and had food with his pills. As I get into our car, he picks up the dog and the three of us critters say goodbye. The routine is expected by our dog and I often kiss both hubby and dog before I leave. When they hear the garage door open in the afternoon they both greet me at the door.

One of the problems of finding activities for my husband is that I have a lot to do myself. I have had to do gardening this week--someone has to do it. My husband doesn't seem to be motivated to do things. Sometimes my husband will do things with me, and yet many times he is content to just let me do things. Sally and I have discussed how we married men who used to do a lot more, and now it is on our shoulders. I need to learn to use the riding mower, but so far my husband (or thoughtful neighbors) mows our 3/4 of an acre.

Increasingly my husband likes less noise and a simple pace of life. Sure I would like  him to go to senior center or do crossword puzzles. Sally and I think that if both of our husbands go to a senior center together it would work, but we haven't tested this hypothesis yet. Hubby is happy and has many options for watching TV--videos, DVDs and cable TV. He also socializes very easily with people.

We always take turns praying at night before we go to sleep. Hubby prays when the date is odd, and I pray when it is even. As I have noted before, I always love his prayers and the fact the LORD is watching our Alzheimer's journey.

Still Stage One--What It's Like

Every person with dementia adapts to memory problems in different ways. Not sure what the stages of dementia are precisely (there are many descriptions of stages and many kinds of dementia), but I thought about our communication prompted by the Alzheimer's Reading Room (link at right).

We use a clipboard where I have typed the daily schedule. My husband has to check off things on it (take the dog out, have breakfast WITH pills, ask Carol if she had her pills, has she fed the dog) and it lists where I am substitute teaching or teaching a class for DUI offenders, when I will be home and what we are doing in the evening. This strategy has helped both of us--me because DH doesn't repeat questions often. Originally this clipboard list was his idea. He even likes this typed schedule when I am home all day.

Some TV news shows keep running the same news. He doesn't get it the first time and the news is repeated. I just can't keep watching the same thing over and over--but he can. I am around the corner in the den usually. He will say to me, "Carol, are you still kicking and breathing?"

I also call him when I get someplace to say I have safely arrived. Increasingly he is "shadowing" me. He wants to know where I am at all times because of that short-term memory and because this gives him security in a world that is becoming confusing to him.

Do our means of communication always work? No. I call him and remind him to have lunch, even though this is on this clipboard. It is the same lunch he is used to: a plate in the refrigerator with a bagged sandwich, yogurt and coconut oil fudge. Yesterday I called him twice during the day to remind him of his lunch. When I got home, he had not eaten his lunch and was hungry for dinner. He says teasingly, “I have been a bad boy. Am I going to get a whipping?”

I just smile at him and proceed making dinner.  In the evening DH will often say, "I think I asked you this before, but how was your day?” Calmly three or four times I tell him the answer to that question. My communication includes one thought at a time or he will tell me point blank I am not making sense.

Often he will not remember what he has decided (let’s go home and not eat at church, for example) and then later when he is comfortable he will say something different that shows he is enjoying his time at church with people he has known for over twenty years. Sunday afternoon he sweetly told of his love for me to others. Sigh!

Living with a husband with dementia, I have been forced to learn patience and other communication skills and prepare for future changes in our ability to communicate with each other. Yes that routine pays off usually, but we have left the house without his false teeth, or with his forgetting to shave. I have been forced to check-up on those routines.

What we do communicate is that we love each other. Like all couples in a happy marriage we have those rituals that show we love each other. What a privilege it is to be his wife/caregiver!