Grandparents' Day

Poster from media-cache-akl.pinimg.com

I received a challenge from Esther at Caring Across Generations in a comment with a recent blog post:

  Write a post about grandparents for 
National Grandparents' Day September 8, 2013. 

So here goes. I decided to write for the grandchild and others who want to know how to interact with their grandparent/friend who has Alzheimer's or who is getting up there in years. 

It is difficult to talk with your grandparents who may not remember what you are saying if they have dementia. They may have Anosognosia Dementia and not know they have memory problems such as our friend has; anosognosia has caused so much confusion for our friend and causes so much grief for his granddaughter. The grandparent may not remember what they ask you and how you answer. Be patient with them when they ask again. They have emotions and the emotional connection of just being with you is so important. We have discovered that emotions live on even if memory brain cells do not.  Get over being annoyed. They can't help it. 

Visit them or spend time with them. I realize this is so difficult for many families. Those grandparents are most comfortable in their own home, but make family holidays special while you can.  Ask to hold their hand if that is comfortable for you. Emotions count! We enjoyed so much spending last Christmas with family and may not always have the luxury of traveling to do that. When you are with them do not spend all your time on you phone or electronic device. Be with them even watching a TV program with them.  My husband's son calls him often and this is a joy to my husband hearing about his grandchildren and great grandchildren. 

Find out what you can do with them. Go with them to a restaurant or a park or a movie. Invite them to your sports event as my husband's granddaughter did for her gymnastics event. Enjoy their smiles. Take pictures with them.  When my husband's ex-brother-in-law mows our lawn, we take him to eat or we have a meal with him at our home. This provides happy times for my husband.

Outings and special chairs.  My husband has favorite chairs everywhere he goes. He has a place he sits at the grocery store and knows he can call me on my cell if he feels I am taking too long. He has a comfortable chair at church that everyone knows is HIS chair. He has a chair at Toastmasters when we go there and my Toastmaster group allows him to be a permanent visitor. As the disease progresses, the grandparent will not be able to enjoy outings, so as a grandchild you need to plan now what to do with that grandparent before that disease progresses and how he/she will be comfortable on the outing.

Do not write off the old person. Years ago I was in a hospital room when a granddaughter broke down at the deathbed of her grandmother. She had to leave the room to cry saying she wished she had spent more time with this loved one as she had wanted. I grieved with her. As the sign above says, "Do something today that your future self will thank you for."

Send them notes. When they give you a gift, they are part of the older generation that expects thank you notes. They may have a fixed income, and plan for your gift. They may not text or receive email anymore for those gift acknowledgments. Receiving a note they can see again and again goes a long way. 


I absolutely loved being a granddaughter and as the oldest grandchild on both sides of the family have many memories that I included in my book, Getting Off the Niceness Treadmill, for the next generation.  After that book was published my cousins contacted me with more stories of our grandparents. Years later a letter I mailed my grandmother when I was a child was returned to me after that grandmother died.  Apparently she treasured that letter.

As a caregiver for my husband who has mixed dementia, I also am privileged to have family care about me. Thank you all so much. I do very much appreciate your care for me, the step-grandmother, and love giver for my care receiver husband. 

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.

15 Things Caregivers Can Do to Be Joyful

The Purpose Fairy has written "15 Things You Should Give Up To Be Happy" and the Huffington Post (calls itself the GPS for the Soul) has widely circulated it--click here.

Joy is the term I will use here instead of happiness.  I use kind, rather than nice. Joy and kind are in the Bible. But I will look at 15 main headings from the above post and make my comments or insert Pinterest graphics after them.

1. Give up your need to always be right. Do not argue with an Alzheimer’s patient. My husband found a Renuzit Aroma room deodorant in his workshop and he took it out, saying it didn’t belong there. It’s okay with him if it is in the main part of the house, but not his workshop. Oh well! I can joyfully go in there remembering that I don’t have to argue with him. There is a reason I put Renuzit there that doesn't make sense to him in his thinking and it just isn't that important.

2. Give up your need to control. But not always with this disease. I wrote a seminary counseling paper on the authority of an Alzheimer’s husband and concluded that, at times, I need to control to be the best helpmeet I can be with God’s help.

3. Give up on blame. I do not blame anyone for this disease and certainly not God.

4. Give up your self-defeating self-talk. Philippians 4:8 tells us to think on whatever things are true, noble, just, pure, lovely, of good report. . . . to think on these things.  

5. Give up your limiting beliefs. Philippians 4:13 says I can do all things through Christ who strengthens me.

6. Give up complaining.

Philippians 2:14 from the Jewish New Testament says Do all things without kvetching [Yedish for complaining].

  7. Give up the luxury of criticism. With the stress of the elections coming and the stress of daily living it is easy to criticize. I want to be a lovegiver instead—to give warm fuzzies, not cold pricklies (a ‘70’s term from Claude Steiner).

8. Give up your need to impress others. Impressing is pure pride as Scripture says: For all that is in the world--the lust of the flesh, the lust of the eyes, and the pride of life--is not of the Father but is of the world (1 John 2:16).

9. Give up your resistance to change.

I realized some time ago, that this journey of my husband's Mixed Dementia would mean a lot of change. I can hide my head in the sand, react to stress by emotional eating, or whatever, or I can research how I can be a good lovegiver/caregiver and give glory to God. This means lots of change that is coming down the pike. Change is growth.

10. Give up labels. I think that dementia issues do put limits on people, but they do not have to have labels. My loved one is not a disease, but a person. There are certain limitations he has, but disable does not mean unable.

 11. Give up on your fears.  My LORD knows how this will all end.

12. Give up your excuses.  This one is a hard one for me. I have to be more responsible now. Someone has to. I cannot say I am happy about my challenges, and would like to have excuses. And it is hard to ask for help as well.

13. Give up the past. This is so true. I live for each day and am thankful for what comes my way. Yesterday my husband mowed one half of the backyard, prompted by our neighbor mowing the front yard perhaps and my suggesting to him for several days it needed to be done.

14. Give up attachment. I love the lyrics by Michael Card in his song “Things We Leave Behind”:

Every heart needs to be set free
From possessions that hold it so tight
The freedom’s not found in the things that we own
But the power to do what is right
With Jesus our only possession
And giving becomes our delight
And we can’t imagine the freedom we find
For the things we leave behind.

15. Give up living your life to other people’s expectations.



I want to live so that one day the LORD will say well done, thou good and faithful servant and He won't expect me to be superwoman, just a woman abiding in Him.

I Would Have Never Thought. . .

1. That God is so faithful every day. But how could I doubt this?!  Early on in this process when I began this blog I thought I would be a basket case by now. Not so. I am not and He is not letting me lose heart.
2. That there is real joy in bearing the burdens of others especially in prayer, not just in concentrating on our own needs.

3. That our neighbor would mow our front and back yards earlier this week.
4. That the LORD would gift us with friends in the same situation--Sally and Jake. This week were have two outings with them.
5. That I have a hearing problem and we can joke about it and MY memory at times--not just my husband's loss of functions.

Hubby says something like "I need some more ice tea."

I ask from another room, "Please repeat. I didn't hear you."

Hubby says, "I can't remember what I asked."

or

I start to tell him something and forget what I was saying and I say, "I forgot what I was going to tell you."


He says, "It won't matter, 'cause I won't remember anyway!"

6. That my husband's prayers are so precious to me. Today at Wendy's he teasingly prayed LORD please forgive Carol for hitting me with her straw cover. We always blow that cover at each other when we eat out. His prayers when we turn in at night are sincere and wonderful.
7. That coconut oil seems to help stabilize DH's mood and maybe help him stay in stage one of Alzheimer's.
8. That my family and my husband's family would be so supportive. I heard/read that Alzheimer's brings out the best and worst in families.

9.  That I don't have my head in the sand about what's coming down the road; somehow part of me wants to be prepared. I also am watching my health so I don't have a heart attack and can't take care of my husband. I want to be able to care for my husband all his days. I say both think ahead and take one day at a time.
10. That blogging is such a wonderful support system and therapy even if no one reads it or comments. Blogging seems to have a life of its own.
11. That ads are creeping onto my blogger account even though it is not monetized. They just seem to be for me. Hope you all don't get them as well. Oops! It was spyware, but computer has now been cleaned up thanks to a friend from church, my computer guru.
12. That there have been almost 400 hits but no comments on the 7/5 Brain Health. . . Kit below. Is this causing some advertisers to think?
 

What are you surpised about in the past few years of blogging or of your life?

Saga Twenty-Six

Car trouble. It's leaking fluid on Wednesday. Hubby notices when we are on errands. Says that someone who parked in our place before must have had a problem. Several hours later I also notice this liquid in our garage when I go to bring something to the car. Hubby has more long-term memory of car repairs than I ever had. I have also never driven a car with so many miles on it. I show DH the problem liquid in the garage.

You may recall that our newer car was totaled. See Saga Seven. The 1999 lots-of-mileage-gas guzzler has been our means of transportation for the last year and a half. It has served us well with our camping adventures. No more popup camping and probably no more camping. Hubby is very happy to stay around home with ventures out for activities and errands. He has accepted not driving as reported in Saga Twenty, despite the fact he passed two Alzheimer's driving tests.

"Call triple A," he tells me. I do that and the same Plant City tow company that picked up our totaled car comes and takes the gas guzzler away. The driver remembers out totaled car being in their towing yard when I show him the picture. I tell him how I use that experience with a DUI driver when I teach classes for DUI offenders.

"Where is our car?" hubby wants to know and I tell him what happened.

Again, "Where is our car?"

"I am bored," he proclaims. This is curious to me because he is usually content watching his extensive collection of old movies which he keeps right before him on the couch. There is no car for us to venture out of the house. I realize that he does like variety. He likes going to Toastmaster meetings with me and of course to our church. He loves going out to a movie if I can find one that has a strong plot, without complicated dialogue and intrigue, that would suit him.

We go to bed at the proverbial old people's time of 8 PM. Thursday and Friday the car will be repaired. I have appointments to change and need our car Saturday and all next week.

It's Thursday morning and I talk calmly about the car being fixed. He has forgotten about the estimated $800 needed to fix the car, but I haven't. I miss the strong hubby who used to take charge of car repairs.

LORD, help me just to do the next thing at home and to trust you for the outcome.

Added Saturday morning, July 14th. Got car back last night with the $1127.75 bill;  took $500 out of savings and charged $627.75. Labor was $878 to get to the problem. Something about the heater and cooling systems. Mileage for this 1999 gas guzzler is 192, 485. Maybe it will last to 300,000 miles now. Have a busy week ahead and glad for two days it could be fixed. Grateful for Sally and Jake who took us to get the car and had dinner with us. Hubby and Jake are soooo funny together.

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!

Book Review: The Best Friends--Part Two "The Knack"

Bob DeMarco from the Alzheimer's Reading Room writes:  "Television is a good baby sitting tool, 

it is not a good Alzheimer's caregiving tool.  In fact, too much TV will bring on the "dull"  faster than a speeding  bullet."  

I just never know how to involve my husband in "meaningful" activities.  "Wouldn't it be just great if he could do puzzles!" people suggest.  "Can you keep him busy?" you ask.  He watches old movies most of the time. This is what he wants to do. I am concerned, but yet trying to work to pay off bills for when I have to stay home to take care of him. He loves being retired and with our dog.

All I do know is that he is contented and I realize as a caregiver I must be doing somethings correctly--that I have a "knack". He loves it when I call him while I am away, but doesn not seem depressed at all.

It's like adopting a special needs child but not letting them know they are deficient but showering them with love. Perhaps there is no need to educate my husband on what is coming down the pike for him, that he should be doing puzzles. Ten years ago I knew very little about dementia and so did he. When he was diagnosed with dementia in December of 2008, he just said he felt fine. We do compensate for his short-term memory with a daily clipboard and regularly talking about what is happening for that day. He has changed, but is not able to do any more than what he is doing. Next week we are trying to incorporate exercise at the gym, however.

The Knack, according to the authors, is a whole set of caregiving behaviors.

Caregivers who successfully learn the Best Friends model of care will develop knack, or the ability to do something easily, and will learn many tricks along the way. Knack for families is all about resilience, about surviving the disease, about providing good care, and about enjoying moments with the person. It is about the quality of life, for the person and his or her loved ones. It is about working through the pain. One door is closing and another is opening. pp. 101-102

They say elements of knack include: being well-informed, having empathy, respecting the basic rights of the person, maintaining caregiving integrity, employing finesse, knowing it is easier to get forgiveness than to get permission, using common sense, communicating skillfully, maintaining optimism, setting realistic expectations, using humor, employing spontaneity, maintaining patience, developing flexibility, staying focused, being nonjudgmental, valuing the moment, maintaining self-confidence, using cueing tied to the life story, taking care of oneself, and planning ahead.

Take the area of communicating skillfully. This means one idea at a time. No pronouns to referred to something or someone in the previous sentence.

                                                               

Take valuing the moment. I have been working all week and have things to do today, Saturday. He doesn't want to come today, and is content to stay home. So we went to dinner last night. He loved it. At dinner he told me he loves me, loves the restaurant and loves his dinner which he slowly ate. I told him that I loved being with him. I didn't have a smart phone to play with, I don't text, I was there for him. I praised the LORD in my heart for this great date knowing what may come down the road with Alzheimer's. I valued the moment.

I think it comes down to having "the knack" as we are in Scripture and growing in the fruit of the spirit mentioned in Galatians 5:

love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control

Self-control is really needed in Alzheimer's care. We can't always control the anger or moods of our loved one, but with God's help we can grow in self-control. Speaking of self-control, I am soon off to my 7 am Weight Watcher's meeting and then on to a Toastmaster training event.

What the Alzheimer's Loved One Wants

I am a guest author on Joseph Potocny's blog at http://living-with-alzhiemers.blogspot.com/  Joe has Alzheimer's and Frontal Lobe Dementia and writes frequently about his situation. He is quite an advocate! I also reviewed his book in January and February posts on our Plant City blog and he put those reviews on his blog.  

Recently on Joe's blog I developed nine guidelines to present to Potocny and he wrote six more.  So here are the fifteen guidelines that loved ones may be wanting from us.

1. Don't do everything for me.
2. Listen carefully and figure out the feelings behind what I am saying.
3. Don't nag me. Create a checklist for me to help me remember. The rest of the world has to use check lists also.
4. Enjoy my personality—I am not the disease of Alzheimer's.
5. Plan outings with me and don’t be embarrassed by whatever I do or say in public.
6. Give me visual clues for memory including a calendar.
7. Sing and joke with me.
8. Bring me into your world.
9. Say one thought at a time.
10. Do not hover over me.
11. No sudden changes.
12. Do not ask how I am doing constantly.
13. Watch your being needy.
14. Do not patronize me.
15. GIVE ME MY SPACE AND QUIET TIME.

Thank you, Joe, for letting me pick your excellent brain!

Two Couples Go to Dinner

By chance, or maybe just a wonderful serendipitous blessing, I meet Sally whose husband Jake also has Alzheimer's. This couple live in our neighborhood and Sally and Jake are not their real names. Sally and I decide that our husbands should meet over dinner at Denny's. Huge success! New couple friends! Husbands both 72. Both men ironically don't know that the other has Alzheimer's, but both find a lot to "shoot the breeze" or talk about.

Now usually I am anxious about conversations with my husband, DH, because they seem to go nowhere and it is SOOO embarrassing when he repeats. Not so with DH and Jake. Both gentlemen tell stories from the past again and again--each doesn't recall but thoroughly enjoys the art of conversation at his own level of cognitive ability--spinning tales as old men can spin tales and somehow not bore each other. Somehow this relishing of old tales delights both gentlemen who engage in vibrant conversation as if they have known each other forever. Both agree that is has been a relief to turn over finances to Sally and me, as if Alzheimer's has nothing to do with their executive decision to turn funds over to their wives.

Both men order pecan pie ala mode for dessert. We stop off at our home and chat on our back deck, Sally and I thoroughly happy for the new friendship. She says she will contribute and help with our garage sale. So welcome! They are coming by Tuesday where Jake will shoot the breeze with DH and maybe shoot pool also, and Sally and I will go off to the Alzheimer's monthly caregiver meeting together. Hope DH and Jake remember each other Tuesday!

Thank you Lord!

To be continued . . . .

I wrote the above copy in the early dawn hours of Saturday about Friday night's dinner. I slept in this Saturday morning. DH was finishing watching "Fifty First Dates" about a couple where she didn't remember whom she was married to. Together we had breakfast and then we folded laundry on the covered pool table. I mentioned the good time we had with Jake and Sally last night and DH did not remember. Jake and DH will need maybe fifty times to be together to remember each other and they may rehash the same stories and not get bored. This is why my husband watches his favorite movies over and over again.