Caregiving the Final Year

I had discussed the options of nursing home care and in-home Hospice care with a counselor at the Alzheimer's Association. I decided on Hospice. My husband could stay at home and since I could resign from my jobs substituting in public schools it was THE solution, rather than a nursing home. It was most comforting to have hubby at our home, as his decline was very rapid as chronicled on this blog.

NOT WALKING. A year ago hubby woke up not being able to walk. He hadn't fallen and I thought it was that arthritis and not a broken leg. A knee brace had been used for a time.  However, in hindsight, his not walking was all about dementia and the plaques and tangles taking over another part of the brain. Our chiropractor gave him increased mobility, but in the end that part of his brain that enabled walking didn't work.

I realize that not everyone is able to keep the loved one at home, but someone has to live with them.  Some dementia patients are difficult to handle because they are angry and their filters for normal social behavior are missing.  Or some wander away from home.  Some turn the stove on and forget they did that and risk burning the house down. My husband didn't cook in the past few years and didn't wander. My husband relished being "normal" and I treated him normally as my loving husband, learning to talk simply to him and always saying "I love you" at least once a day. It worked for us. He had a good disposition and just loved watching TV and enjoying his DVD collection. We both loved our home. I would keep busy, but not really concentrate on the TV he was watching.

Hubby in hospital bed at left;
dog Ziggy on my twin bed. 

HOSPICE decision. We took out the king-sized bed in the master bedroom, the Hospice hospital bed was moved in and I slept by hubby in a twin bed pictured. Our dog Ziggy moved between our beds. I learned from Hospice that hospital gowns at home are made by cutting the back of a T-shirt up the middle but not through the top ribbing so they would stay on; this made it easy to change their top. By this time my husband was bedridden and using adult diapers.

Handy dining room cart moved to bedroom

TV, bomb box and cart for supplies

Hospice needs a station to do their work. I used a cart from the dining area and moved it to our bedroom. The "Depends" type products were stored on a chest nearby. Near the end of Hospice, a Home Health Care Aid came every day and I actually learned to change my husband's diapers and he never got a rash. The nurse who came when he died noted that he had been well cared for. He was loved and made to feel normal.

My dear husband knew he was dying and told Kenny he was ready to stay in bed -- he had had enough of moving from the Geri chair to the bed. He would tell Kenny things that he didn't tell me, because he needed to feel normal around me I think. Kenny was his buddy--not a volunteer caregiver in my husband's mind.

I believe that Hospice in the home is a great way to take care of our loved ones. They are most comfortable at home. Look at this wheel with all the services Hospice provides.

Support groups and other help. An Alzheimer's Association support group is most helpful. We caregivers need support. We HAVE to get respite. People were always with my husband when Hospice was called in. I went to the grocery store when the Home Health Care Aid came, and went to church when someone was here. For months I had been contracted to teach three classes and someone was with my hubby for many hours those three days. I had to ask for that help from friends.

When hubby went downhill I started taking 10 MG of the antidepressant Paxil that I will get weaned off of hopefully when I see my doctor in September. I tried to stop because it is non-habit forming, but that was a mistake and I needed them to maintain my hormone levels and an acceptable mood. Then l read where you need to get off Paxil slowly. I have had two counseling sessions--one with the Alzheimer's Association and one with Hospice. Neither of these appointments cost me a dime. Both counselors also advised me to taper off of Paxil slowly.

TAKING CARE OF ME.  Many caregivers pass away before their loved one dies because of the stress perhaps--maybe 60% I have read somewhere. The grief added to years of caregiving can take a heavy toll. I am finally taking care of me. I went to the dentist this week and before my hubby died I had someone at the house so I could keep my mammogram appointment that had been scheduled for a long time. I am going to Weight Watchers again--glad that I didn't gain all the weight back that I lost in 2012. I think some of my gaining back weight was that ice cream that hubby and I enjoyed together--one of the last things he would eat. I have not had ice cream since he died--it would cause a grief burst to have ice cream.

I am both relieved and grieving and need more sleep--even dog Ziggy needs more sleep.  I am trying to get out and about and do things that bring joy to my life. I am discovering what works for me, glad that I can still do things.

I am going to a grief support group. Hospice has them, but I am going to a thirteen-week grief group with my friend Sally at her church. We are using Grief Share: Your Journey From Mourning to Joy, published by Church Initiative, P. O. Box 1739, Wake Forest, NC 27588. It has a manual with homework and also a video that the facilitators play in class. Tonight is my second session.

Today I go vote and I am less prepared to vote than I have been in the past. I started to watch the Emmy's last night and realized that I did not know these TV programs up for nomination.

THIS BLOG WILL CONTINUE.  Stay tuned. I am writing a seminary counseling dissertation on dementia caregiving and then finding a publisher for the popular version of that manuscript.

You have turned my mourning into joyful dancing.

You have taken away my clothes of mourning 

and clothed me with joy,

that I might sing praises to you 

and not be silent.

O LORD my God,

I will give you thanks forever. 

Psalm 30:11-12 New Living Translation

Joy and Stress in Caregiving




http://bitsotruth.blogspot.ca/2012/08/02500.html

Ginger is a mom of many (natural and adolpted) that I interviewed several years ago for the class I taught on counseling children. I had emailed her asking for the link to "Are You a Good Person?" that she has on her blog, Clark Chatter here. From Ginger's busy life she thoughtfully wrote back today:

I'm praying that you will continue to find joy not only in loving your husband, but in serving the Lord through your service to the man you love.

Thanks, Ginger! I count on those prayers.  I didn't get the fancy widget, and I tried, but I did put it in the links below.

This reminded me of my husband's prayer here that the LORD would give me a shot of joy.

It also reminded me of the post I put together on 15 things a caregiver can do to be joyful here. That post has had nearly 500 views to date. People need joy.

Yet it is no small thing to have joy in caregiving. After all it is indeed stressful especially when it is your loved one. You become like a parent raising a very difficult child, with one difference: this adult child will never grow up, but will deteriorate and the demands will increase. Hence stress.

 

My cousin Nanci Alcorn and her husband prolific author Randy Alcorn have just released the 2013 edition of Women Under Stress and they send me a copy. You can order it here  from Randy Alcorn's blog. I read their 1986 edition at a time in my life that indeed had been very stressful. I know Nanci has been a caregiver for her parents, my dear aunt and uncle, as well as for her mother-in-law early in her marriage to Randy. Nanci's own daughter went through a huge medical crisis last year. The Alcorns do indeed know about dealing with stress.

I began to read the new edition yesterday while I was substitute teaching. I had been trying to up my production here going through The House That Cleans Itself and often feeling inadequate and wondering if you all in the blogosphere are wondering when I will get the next area finished. Then in Women Under Stress I took the test. Folks, I am not Type A person, but am between Type A and Type B. This is encouraging to me. I do not have to be that driven woman and maybe am not slated for that heart attack any time soon. The Alcorns write:

Type B's are mellower, low-key, less driven, unhurried, more patient with others, and generally have less to prove than type A's. Not only can they take a vacation, they can have a great time on it. Type B's enjoy life more, and have more time for people. B's tend to be people-oriented, while A's focus on the products. (p. 28)

Today I stayed home and gardened and made pizza. My hubby smiled when I told him my joy with being his wife the homemaker gardening and making pizza.

I reflect that at first when my husband was diagnosed with dementia, I was depressed and didn't talk with him about it. We tended to not have the best connection then and probably the world didn't make sense to him. I remember when six months after the diagnosis he was very confused about retiring from his work and I was beside myself trying to wonder how the finances would work out. I guess you might say I was angry with God. But that has changed now as this stress is being transformed by my faith.

Time does not heal all wounds. Time alone will only allow the cancer of bitterness to grow. When we refuse to cater to our emotions and refuse to indulge our fatal tendency toward bitterness, only then will time bring healing. . . . There is no sin Christ didn't die for, no sin He cannot forgive, and therefore no sin that we, in His strength, cannot forgive. (p. 80)

Yes, as Randy points out, depression can come, but our LORD can transform it. Hope and heaven are around the corner. Joy is every day.

Stress, you do not own me. Joy does.  

Today

I want to talk about the plants I repotted

and the pizza I made

and JOY.

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.