Dealing With Caregiver Stress

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Graphic from Vitacost

I am on a campaign to deal with stress in my life. I need margin for things that come up. I need to cope with duties like emptying urinals, preparing and removing false teeth, pretending that I am not asked the same question repeatedly and dealing with the anger of sundowners. Patience, Carol, it's called patience.

When Sally and I went to the Alzheimer's Association Support Group recently. Sally shared wonderful advice for our care receivers that say anything contrary to what is correct. Just say,

"Sweetheart, that could be true!"

Works like a charm.  I've tried it. Gives you something to say. 

At the support group we received the Associations's pamphlet, "Take Care of Yourself: 10 Ways to be a Healthier Caregiver". The pamphlet gives ten things to watch out for: denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration and health problems.

 So I thought I would reflect on these ten ways. 

1. Understand what's happening as early as possible. It is common knowledge that the shower for the Alzheimer's patient is a struggle.  I have interviewed caregivers on this blog for my own preparation for this journey,. 
2. Know what community resources are available. The Alzheimer's Association has much help available. 
3. Become an educated caregiver. We will have stress, so deal with it and learn all you can about the disease. 
4. Get help. Look around my house and I feel so hypocritical because I have been blogging about the book The House That Cleans Itself. It hasn't been working for me lately. The rooms that were finished were somehow trashed again because I didn't work at it. I am still enslaved with the endless de-cluttering.  Encouragement of help from Kenny, Margaret and Pharis. Margaret, Kenny's mom who is a few years younger than myself, sees all I have on my plate. Kenny brought over a DVD for me to watch. Novel idea--sit down to watch something! Margaret who comes over to help with DH's pills or lunch when Kenny cannot, decided that helping with cleaning would help my stress level and I worked with her to do that one day. I look around and the house is better and I am encouraged to keep it up It was actually fun. She helped me get rid of clothes I didn't really need to clutter my my closets--huge relief--something I had not gotten to in the bedrooms. We are not done with the clothes, but there is a start. And there is help for the outside gardens and the roof with Pharis and his teenagers coming over next Saturday.
5. Take care of yourself. It was a treat to have lunch with Sally this week while our husbands were at Plant City Senior Center for the middle part of the day.  
6. Manage your level of stress. Right now medical bills I haven't had time to research are on my plate--some Preferred Care should have paid. Can you believe they think my husband fell in the house and that the homeowner's insurance should pay!!! We may change to another plan. Got to think medical bills through--pay a little on each. I know where they are--just for some reason haven't gotten to them. The denial of stress I guess. 
7. Accept changes as they occur. My husband's trouble walking has been hard for me, but fortunately the chiropractor is helping him. 
8. Make legal and financial plans. Did that early. 
9. Give yourself credit, not guilt. Actually I want to thank my LORD for sustaining me and forgiving me. 
10. Visit your doctor regularly. I saw my doctor on Tuesday. She gave me a prescription for the lowest dosage of Paxil, an anti-depressant, should I need to take it. I am getting it filled should I need it and some days I do feel I need it. I took it years ago when I was a widow and it helped me over hard times. 

The decision to not take ANY long-term substitute position is related to stress. I need to keep life simple.  I really think that life is a bear many days, and not just for ordinary living stress, but also perhaps it is because of my husband's Alzheimer's that it's hard to cope lately.

Yes,  I am so fortunate to have help. But there are no guarantees in this life and my future in heaven is secure and longed for.

Going Downhill: What Husband's Dementia Now Means

I wrote on June 5, 2013 HERE.  Before that, July 3, 2012 I reflected HERE. These posts and recent observations show clearly that hubby is going downhill.

Bird house was last project. 

The last thing I recall my husband building, was a bird feeding station that he carefully fixed on a pole that used to house a DirectWay TV dish that pointed south. We changed to cable and we did not need that stand cemented into the ground. Hubby came up with the birdhouse solution. This project was in the earlier stages of dementia and I did note how he seemed confused figuring out some of it. Somehow he has wanted to maintain his equipment in the workshop, and carpenters since then have remarked at how organized this workshop is. I laugh, because I have cluttered up that workshop with items we used to take camping and other junk to go in a yard sale. I long to make this workshop an exercise room and use it for my storage and even Pharis has offered to transform that room.  It's as if I do not want to let my husband's workshop go.  I want that workshop to continue as a carpenter's workshop even as I want my husband to continue to be the same.

But now hubby is going downhill.

How does this make me feel? It is very hard. Thursday night I reclined on our long couch in the den by my husband who was sitting in his spot watching TV. I was occupied by depressing thoughts and trying to pray.

Lord, I do not want things to change. I want arthritis to be the only thing wrong with hubby now. I want that new pill to fix the arthritis and I want him to walk even if it is with the walker. I want my mellow husband back. I feel guilty now going to the store without hubby who has wanted to accompany me everywhere.  The whole dynamics of our marriage is changing in that I have had "the better" and now have "the worse" of those marriage vows.  But, LORD, it is not all about me. I accept that you are using this situation for my sanctification and thank you for so many who have come along side of us. 

I wondered reclining on the couch if I needed an anti-depressant. Then Kenny and his brother-in-law came over. I got up from the couch to greet them. They were over borrowing tools from hubby's workshop. They needed tools to fix a car, but unfortunately hubby didn't have those tools as my husband's hobby had been carpentry, not auto-mechanics.

"What's wrong?" Kenny asked. "I usually see you upbeat."

"He's not getting up to walk and I am afraid of all that is coming." Kenny and Kevin promised to pray.

What do do about dinner Thursday night.  I started it, but hubby wanted to go out, forgetting his limitations. He hobbles to the bedroom to change from his jeans shorts and T-shirt into slacks and a nice shirt. This outing however would not be easy. I packed the 8 PM pain pill in my purse.

Usually hubby would interact with the waitress, but not Thursday night. The walker we took to the restaurant was stored elsewhere and I went to get it when we went to leave. "I don't need that!" But yes he did and does. He has memory of walking, but is in denial about his current limitations.

"Use it or lose it," you hear about walking and artritis. I took the urinal away from him on Friday thinking that going to the bathroom would encourage walking. However, Friday night he wanted that urinal rather than walk to the bathroom and I came to observe that he had peed in his jeans during the day. Slowly he changed out of them as he got ready for bed. I have been helping him and notice all I have to do now that he did over a month ago.

1. I retire his false teeth to be soaked over night. In the morning I get his full uppers and partial lower false teeth for him along with new Seabond that keeps the uppers in place. 
2. Taking meds is a battle of the will. Kenny said that Friday morning after I had left the house to substitute teach, it was an effort to get hubby to take pills. He was stubborn for me last night as well. 
3. Shaving and showering is done with Kenny's help.
4. Dog Ziggy "needs" a ride in the wheel chair--translation hubby doesn't want to use the walker. 
5. He has a worried look on his face, reminiscent of my father and uncle as they aged.  These two relatives did not have dementia, but did have that worried look.  Kenny thinks that my husband's eyes look different.
6. Hubby doesn't answer phones now in the last several days. Friday morning when I got to school and called, Kenny answered the phone and gave the receiver to my husband. 

Yes coconut oil, and Alzheimer's meds have delayed the inevitable. Yes I have been a Pollyanna. It is here, folks, what I interviewed Dolores, LaTane and Laurie about. What I have read in Linda 

Born's book and Linda Fisher's book and other books. What I have heard in the Alzheimer's Association Support Meetings.  Ready or not, here IT comes--the very difficult days of being an Alzheimer's caregiver. 

Friday I finished reading a novel, Crazy Lady by Jane Leslie Conly, to the special education students I have been substituting for this past month. In that novel middle school student character Vernon has to let go to a special needs young neighbor, Ronald, whom he had been mentoring. Vernon experienced anger at Maxine, Ronald's alcoholic mother, and grief when Ronald was carted off to live with relatives in another state. Vernon had done so much for Ronald--sponsored him in The Special Olympics and told others about Ronald saying his first word. Vernon ran alongside the car that carted Ronald off with Ronald looking back in the window. Finally the car sped off and Vernon falls, rolls and hits concrete:

I tried to speak, but nothing came out. I hurt all over. A hand moved up my legs and back, feeling for broken bones. It moved around my neck and rested on my face. It smelled familiar. "Vernon," Daddy said. "I'm here." (p. 180)

My students and I had quite a discussion on all the emotions of Vernon went through in the book. I know that my Father in heaven is there for me now, but I hurt all over emotionally. I must blog whether anyone reads this or not.

This Saturday morning hubby asks me what street we live on. Every time I cough he asks me if I am okay. He is sad he says today. He says he misses Jake and Sally who have been out of town. I miss them also. His son calls from Virginia and I talk with him about the deterioration which is evident to the son after he talks with his dad. Hubby takes forever to do anything. I edit his pills--no vitamins and fish oil--but other essentials have not been taken. He waits in his wheel chair watching TV for over an hour, not sure when he will sit in his padded spot. After some time the spot calls to him and he makes it there when I am in the den blogging.

As I am writing this post Kenny comes over for the ritual shaving and shower. Hubby is resistant to the shower, but we manage. Thank you LORD, for Kenny and the prayers of you all who read this.

Added Sunday, Sept. 29: It's official. I am only allowed one day at the PITY PARTY according to Jean Milsap, 20 year caregiver whom I interviewed in July here. So be it! The lady has spoken! 

Amazing Help

Garage and roof  leak
by garage door 

Tuesday I mentioned to Kenny, our caregiver neighbor, about the leak in the ceiling in the garage.

"Carol, you'll have to get that fixed or your house will have mold," Kenny warned.

I often have my head in the sand about repairs around here.  So often overwhelmed with mechanical repairs and the expense of maintaining a home with a husband who cannot help any longer due to his Alzheimer's, I am tempted to throw my hands up in despair. Sure there is a list of thinks to fix and what if one is the most important?  It can remain on that list with no action. However  I guess a roof would need action. How can I manage to get the roof repaired and how quickly can I afford to do it? Big concerns.

When it rains it pours and shows a leaky roof!

It was also last Tuesday that hubby woke up unable to walk again--no specific injury, just must have twisted his knee at night.  Jake also wasn't feeling well, so hubby and Jake did not go to Plant City Senior Center as is their usual activity on Tuesdays. When it rains it pours. They say trouble comes in threes. Waiting for the third trouble. However each day since Tuesday hubby is doing better.

Fitted knee brace

Not being able to walk is possibly a return of July when hubby did something to that same knee cartilage and came home from the hospital to be fitted with a knee brace. We still have that knee brace, a walker, and a wheel chair.  We had a port-a-potty, which also comes in handy. Kenny and I can lift hubby, and Kenny by himself has done this when I have been gone substitute teaching since Tuesday. Kenny, bless his heart, has been there for hubby. When I come home hubby has an illusion that he has been walking around. However, this Friday morning he asked what has been going on and I reviewed what has happened as I help him get dressed. Each day he has been able to put more weight on his braced knee. I am thinking that the hospital cannot help any more than what we can do at home. I could be wrong. There is so much mystery to being a caregiver and life at the hospital was so confusing to hubby in July. He is happy to be home and forgets about his knee during most of the day.

Bartering for services

Also, on Tuesday, Wayne came over to mow our yard. He introduced us to Pharis and his daughter. Wayne had mentioned a possibility that trading some of our equipment such as the riding lawn mower with Pharis, which would enable Pharis to get yard work which he needs for income. I wouldn't have to put equipment in a yard sale. Furthermore Pharis was willing to weed in our yard and help in other ways in exchange for this equipment. We struck a deal! But also, can you believe it--Pharis can repair roofs!

So not only did we strike a deal for the yard, but also for the roof and ceiling repair in the garage! Pharis will be over this weekend to repair the leak! We will go to Home Depot for supplies and take advantage of six month interest free on my Home Depot card. This plan is so much better than a yard sale. Someone weeding our large yard is so much better than my doing it now! Thank you LORD!

Meanwhile another deal has been struck. I am substituting for about five weeks in one special education class through September until the regular teacher returns. I have already fallen in love with thirteen sixth, seventh and eighth grade students whom I have all day except for PE. There are also two teacher's aides in the classroom.  So I have been working on lesson plans in my "spare" time like 5 am when I am also finishing off this blog post.

This week in my Daily Audio Bible yearly trip through the Bible I have been going through the book of Job and also 2 Corinthians 1.  Yes, my life reads like a suffering Job at times with all kinds of counselors advising me to put hubby in a nursing home and that not seeming right for us. Then I read 2 Cor. 1:3, 4 and it brought such peace this week:

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 

Oh I have so needed comfort about our situation! Both Sally and I have been down lately because of our caregiving responsibilities for our husbands. Sally comforted me with her prayers the other night. I prayed with Pharis and his daughter for their financial needs and trust that the new equipment that Pharis has will enable him to provide for his family. Blessings and comfort all around instead of trouble coming in threes. I am overwhelmed by blessings, not trials! 

And those blessings abound--hubby's knee is getting a little better each day,  we have help for the yard and the roof, Kenny continues to be there for us and I can earn money substitute teaching in a special education class.

Here's to blessings--not troubles! 

What Excess Weight Did to Kenny

Kenny Sexton , volunteer caregiver neighbor, was interviewed HERE last week. The reason Kenny lived in a nursing home and studied Alzheimer's patients first hand, was that Kenny was very overweight. When I showed him the above graphic, he said he experienced many of the above conditions.  Again we are sitting at the dining room table in our family room with hubby watching TV nearby. Kenny and  I prayed about this interview.

Carol: I am thrilled that you are so willing to be candid in this interview, Kenny. Why are you willing to talk about your 350 pound weight loss and all the health concerns?

Kenny: I do not want others to go through what I have gone through and I am happy to share what I have learned. I take 17 medicines and will continue to have medical problems, even though I lost all that weight. I also had to learn to deal with emotional eating and with gluttony as a sin. I had to learn that food is not me and that God can help me overcome. Most sin gives us attention or something we need.  I needed to practice getting my needs met through my faith.

Carol: Did anyone ever try to talk you into bypass or lapband surgery?

Kenny: Yes at the nursing home, but they told me I had to lose weight before that surgery, and as I lost it I thought I could just continue and not need that surgery.

Carol: What have been the subsequent health issues above that you are dealing with? Let's take them one at a time.

Kenny: Migraines was not the big thing for me, but depression was. Depression was a precurser to over eating, and then the more I ate the more depressed I became.

Carol: Can you identify triggers to depression?

Kenny: I felt worthless and others made me feel worthless. With Christ I have realized that my worth is in Him and God has given me strength to forgive and to overcome the depression. Then I was able to get the help I needed by living in a nursing home and being in a program for two years.

Carol: You told me that some of the conditions above you do not have (migraines, Dyslipemia Hypercholesterolemia, Obstructive Sleep Apnea, GERD, and Gout and of course Polycystic Ovarian Syndrome). But all the others you have and we don't know about mortality on the chart above, as if any of us know when we will enter our restored bodies and be with the LORD. Obviously your quality of life has vastly improved.

Kenny:  Oh yes. Seven years ago I couldn't even walk to my mail box and I was afraid I was going to die. I needed help and the nursing home and Concord Care near Youngstown, Ohio helped me gain my life back. I have kept weight off for five years now.  

Carol: Which of all the conditions above are causing the most difficulty?

Kenny: Definitely Type II Diabetes. No one in my family has had it and it is weight induced.

 

Carol: Explain.

 



Kenny's Leg Cellulites

Kenny: Diabetics take a long time to heal when they have a sore. I have cellulites, an infection of the skin. I go to have my bandages changed by a nurse at least five days (at one point seven days). Twice a month I see a foot doctor. I may loose a toe due to infections. My Venous Stasis Disease is not resolved yet unlike the above graphic. I have my diabetes under control with shots twice a day and pills twice a day, but this will continue as long as I live. I have learned that I can have sweets, but in a moderate lifestyle. I have learned to not do without certain food, but to plan wisely what I eat.

 

Carol: What about liver disease?

 

Kenny: When I first found I had Non-Alcoholic Fatty Liver Disease, I was in stage four. Before I had too much amonia in my blood, I would fall asleep and forget things.With medication my liver functioning has gone down to stage one.  At this point I do not believe I need a liver replacement, but will continue to have to take medicine for my liver. A lot of this change is that I watch what I eat and have never had a problem with alcohol even though I have this liver disease.

 

Kenny: I do have COPD (Chronic Pulmonary Disease) and Asthma and yet I have never been a smoker. They say this is from second-hand smoke from my father and four grandparents. Asthma comes along with the COPD. I didn't not have problem with Asthma until I was so heavy. The COPD was diagnosed later.

 

Carol: What conditions have improved since the weight loss?

 

Kenny: Cardiovascular and hypertension, urinary incontinence. Degenerative joint disease I still have, but not as bad because I have less weight. My joints hurt from it, and I hope to lose between 75 and 100 pounds to help with this. The more weight I lose, the less disability I will have. 

Carol: Again, Kenny, I am so grateful that our LORD is now using you with several Alzheimer's patients including my husband. Do you think when you legs clear up you may be able to get off on disability and work in this field.

Kenny: That is my goal. I would like very much to go back to work.