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

Cures for Dementia?

Picture from Find Home Remedy link noted

Are you kidding? 
See HERE.

Find Home Remedy - The World's Largest Home Health Remedy Blog keeps spitting out cures.  Several a day. Dementia cures are written by Reubenna--do not know who this person is, but click on her name and she has written other cures as well for this site. With all the ads on this site Reubenna might be an ad writer. Who are you, Reubenna? 

Expert Reubenna writes: Although proper medication along with therapy is the way to cure this, there are certain natural ways with the help of which dementia can be tackled. 

Reubenna, what would that proper medication be? What would that therapy be?

Reubenna lists these eleven home remedies:

1. Give them warmth
2. Familiar environment
3. Healthy diet
4. Antioxidants
5. Vitamin E
6. Omega 3
7. Ginkgo
8. Salvia
9. Aromatherapy
10. Pet therapy
11. Message 

I can say that coconut oil and turmeric does help. My husband gets both, but he is still going downhill maybe because of his Vascular Dementia which could have been avoided. He also has Alzheimer's which I do not think has a cure once one has it. But coconut oil helps his brain fog and turmeric reduces brain swelling. The Byrd Institute in Tampa, where my husband was diagnosed with mixed dementia, is currently conducting research on coconut oil. 

Can we predict dementia early? Peanut butter can help. Google that. Also check out this infographic HERE for what might predict Alzheimer's. It says at the top of thin infographic that it is in partnership with the Alzheimer's Association. 

I pinned the Reubenna's dementia cure post on my scam board on Pinterest and am going to try to put this post as a comment for Reubenna to read. 

Belgium's Disturbing Take on Alzheimer's

The Wall Street Journal HERE reports on Belgium's easy euthanasia. Two 43 year old twins died together. Here is how the Journal described their death.

On Dec. 14, Marc and Eddy, after a long legal and medical journey,

met their doctors and family in a Brussels hospital, according to their doctor.

They enjoyed a final cup of  coffee and lay down in adjoining beds,

where a chaplain said a prayer. Then they waved to their family,

pointed up as if to say "see you on the other side,"

received their injections, and were gone.

What was their illness? The identical twins were deaf and were facing blindness from a genetic disorder. It turns out this is legal, not only in Belgium, but also in Luxembourg and Netherlands. France is considering euthanasia and Switzerland allows assisted suicide. In the USA the states of Montana, Oregon, Vermont and Washington allow assisted suicide where the patient himself administers the lethal dose.

It turns out the Belgium parliament is considering another bill on Alzheimer's according to that Journal article.

Another bill would let patients with early Alzheimer's sign

a declaration asking to have their life ended when a doctor

concludes they're no longer interacting with the outside

world, even if they seem vigorous and happy at the time.

Now, patients must be lucid to request euthanasia,

which is generally carried out soon after.



Can't you just see where this is going?! My husband takes the pills I give him, but under no circumstances do I want to let him give himself a lethal dose or his doctor for that matter. I want him alive as long as the LORD wills. At one point Hospice may need to be called in, but that is pallative care which is a whole different subject. 

The Journal reports furthermore that a lovely 72 year old lady in Belgium, Gerda Windgasse, has beginning Alzheimer's as my husband does. Her first doctor wouldn't allow euthanasia because of Gerda's Catholic beliefs. She changed doctors. Her new doctor, Peter De Deyn, says that he has euthanized about 20 dementia patients. Gerda's husband says "It's out of love for her that I couldn't stand the full decline of her personality."

As a woman of faith I see huge problems with Belgium's new laws.

1. Thou shalt not kill means suicide in my book. It is murder.
2. The LORD choses the time of our death.
3. Suffering has meaning.
4. Caregiving has meaning.
5. Others can come alongside and share the load of the care receiver and the caregiver.
6. I married in sickness and in health, for better for worse until death do us part.
   

I love the example of my care receiver husband who lives one day at a time. Sure I look to the future and what our needs might be, but I also live one day at a time.

The world is a better place because of Helen Keller, both deft and blind. The world is a better place because of Joni Eareckson Tada, gifted author, speaker and artist.  But this world is not all. We have this life as a preparation for heaven.

Margaret Thatcher Had Dementia




Picture from
 http://www.biography.com/people/margaret-thatcher-9504796\

  The news yesterday stated she died of a stroke. I signed a sympathy e-card at 
 http://actions.usagainstalzheimers.org/p/dia/action/public/?action_KEY=10377

But dementia over the twelve years weakened Mrs. Thatcher. Melissa Healy in the LA Time article here observed:

While former Prime Minister Margaret Thatcher was reported to have died of stroke on Monday, few experts doubt that dementia, the disease she lived with for at least the final 12 years of her life, contributed powerfully to her demise. . . . But the added risk of death that comes with dementia is well documented: among 70-year-olds who have been diagnosed with Alzheimer's, 61% are expected to die within a decade; among 70-year-olds without Alzheimer's disease, only 30% will die within a decade.

Mrs. Thatcher is noted here for saying:

• If you want something said, ask a man; if you want something done, ask a woman.
• It is not the creation of wealth that is wrong, but the love of money for its own sake.
• To me, consensus seems to be the process of abandoning all beliefs, principles, values and policies. So it is something in which no one believes and to which no one objects.
• We want a society where people are free to make choices, to make mistakes, to be generous and compassionate. This is what we mean by a moral society; not a society where the state is responsible for everything, and no one is responsible for the state.

Albert Mohler, who met the Baroness, wrote today here:

Baroness Thatcher once described her understanding of how the Christian faith should influence political philosophy and public policy. Speaking to the General Assembly of the Church of Scotland in May of 1988, Mrs. Thatcher argued that Christians “must not profess the Christian faith and go to church simply because we want social reforms and benefits for a better standard of behaviour; but because we accept the sanctity of life, the responsibility that comes with freedom and the supreme sacrifice of Christ.”

In explaining how the Christian faith should impact politics, she suggested that the Bible does not tell us “exactly what kind of political and social institutions we should have.” As she explained, “On this point, Christians will very often genuinely disagree; though it is a mark of Christian manners that they will do so with courtesy and mutual respect. What is certain, however, is that any set of social and economic arrangements which is not founded on the acceptance of individual responsibility will do nothing but harm.”

What a principled lady she was! Our world has been blessed by people such as her and Ronald Reagan, and unfortunately dementia/Alzheimer's took both leaders.

What I'm Learning About Senior Health, Part Two

I wrote about senior health in Part One below. Here are some more tips I am getting. If it is in red, click on it.

Coffee is okay for us--no more than three cups according to Dr. Oz.

Here is a link for Vitamin D  which is being studied. We take it.

Another link for Cocoa and chocolate.   which may be good for dementia patients and all of us!  Studies show a large amount may help. Maybe we can do our own research. Hubby does get chocolate with his coconut oil! Some Walmarts have dark chocolate and sugar free chocolate chips that work fine. That coconut fudge recipe comes from Dr. Mary Newport's book.

Now they say that Duacetyl (DA) in Popcorn, that gives it a buttery tast, is linked to making Alzheimer's worse. Plain popcorn is best. Wish I hadn't gotten rid of my air popper! I just threw out microwave popcorn with suspicious ingredients.

As I have written before, I wonder about all the additives that primitive cultures don't have. Some friends are into the Paleo and Gap eating, and there is a lot of wisdom to be found in studying what is best for us even if the studies have not come out that prove anything conclusively.

Exercise is so important for us, but we shouldn't jog. I now walk three times a week with my neighbor. My husband complains when he has to walk very far, but I do have to take care of me, his caregiver.

Red wine has benefits, but not too much alcohol as it can cause

Alcohol-related dementia according to this British study and other studies. Actually my husband forgets about his beer in the refrigerator and is happy with green tea, so good for us.

In addition to green tea, dark chocolate, tumeric and coconut oil which I regularly write about here, I have some other superfoods that I regularly use:

• cooked spinach
• tomatoes
• blueberries added to yogurt
• cinnamon added to sweet potatoes.

What are your superfoods?

How do you use them?

Note that this is the third year that I have been in an Alzheimer's Association walk. You can contribute if you click on the link at the top right. Thanks for doing this. My team is my Alzheimer's Association facilitator who has taught me so much.

Third Book Report--Could It Be Dementia?

So far this is the only Christian book on dementia I have found, and it is fairly new--copyright 2008. It was published in the UK where caregivers are called "carers". The authors, Louis Morse and Roger Hitchings, both work for Pilgrim Homes in England and are used to dealing with dementia patients. They write from a Christian perspective and answered questions for me.

• Maybe we do need "Parish Nurses" to show how Christian do love each other(John 13:35). I am in the process of finding a support group or maybe starting one. "Looking after someone with dementia is not just time consuming--it is all-consuming. It drains your emotions, your energies and your finances." (p. 170)
• Loneliness is painful for people with dementia. Okay! That's why my husband loves for me to sit by his side while he watches old movies that bore me. Conversation doesn't always make sense to him, but he loves to be with me, go on errands with me. (He used to not like to go shopping with me before the dementia set in.)  
• I need to keep my husband as involved as is possible the authors suggest. I came home yesterday and he was preparing to mop the bathroom floors. I will let him finish that instead of doing it myself.
• My husband swears now when he is frustrated and while this bothers me, I read "The swearing is not because of a suppressed sinful desire--it is the disease. . . .Part of the impact of that terrible illness is this aberrant behaviour, and he has no control over it. It is not that he doesn't want to control it--it is beyond him." (p. 142) Fortunately he doesn't swear at me, just other drivers, or situations that frustrate him.
• "There needs to be less focus on their 'deficits', and more on their needs as human beings." (p.149) My husband is not a disease, but a wonderful human being with personality, likes and dislikes. The authors stress having photos and memorabilia around so that he is reminded of his likes and memories. He has photos of memories on his Facebook page and I am still trying to get him to respond to grandchildren who post on Facebook. I need to make his scrapbook soon!
• "Caregiver syndrome can lead to high blood pressure, diabetes and a compromised immune system." (p. 123) I need to take care of myself so I can take care of my husband. I guess I need a support system perhaps more than this blog.
• He asks me repeatedly "How was your day?" and I repeatedly tell him. I am afraid to ask him how his day was because he won't remember. "People with dementia still need to know that they are loved. They want the same kind of reassurance you would give a child--or anyone for that matter--a hug and a reminder that God loves them too." We often tell each other that we love each other and show it in other ways.
• "And sometimes, an individual who is not normally able to speak coherently will say the most beautiful Grace. One home manager said, 'Even when everything looks to the contrary, I am convinced that the Lord keeps His connection with us, through to the very end.'" (p. 118) Where once my husband initiated devotions and theological discussion, now I need to initiate Bible reading. Yep! He still prays wonderful prayers, as if he doesn't have dementia.

The Struggles of Someone With Dementia

I told my sweetheart twice that I would be home between 8 and 9 PM on Wednesday. I was home as expected by what I had told him, but I had not written the time on the calendar. Then I forgot to turn my cell phone back on and when I finally did there were frantic messages there left on that cell phone every two minutes! Apparently even the dog was waiting by the living room window for me. I must remember to write things on the calendar.

I make sense of life for my husband. When I don't make sense to him it is frustrating for both of us.

Lately my husband has been going to his computer. Maybe this is a good sign as he exhibited little interest in his computer in previous months. When he is interested in going to a movie, he goes to that link; then he is often disappointed when we go to the movie he selected. The movie doesn't make sense in the end to him. He prefers old movies on TV I believe.

Who is our plumber? he wanted to know as he looked on his computer. He used to handle all that information and now I do--the woman not trained for such situations. I made no sense to him about plumbers--I couldn't give him one name of a plumber. He was extremely frustrated that I didn't know. I did know the carpenter, the electrician and the vacuum cleaner repairman as I have dealt with them in the last two years. But plumber? There are a half a dozen plumbers in the Outlook on his computer! He scolded me that I was supposed to know. Life is confusing for him, just when I think he has stabilized or made a little progress because of coconut oil.

My sweetheart was barbecuing outside the other night. The Webber grill fell down and the steak fell on the ground. Today it is on its legs again, but he couldn't explain why or what happened.

I want to learn to use the riding lawn mower in case one day he can't use it. However, I don't want to take his capabilities away from him. He is very proud of using it to mow our front lawn and two back yard lawns. Each day he does something in the garden and it is starting to show.

Tuna Noodle Coconut Oil Casserole

My husband doesn't like salmon. At times I can sneak in a tuna casserole. So I developed this recipe with MCT.

1 Betty Crocker Creamy Parmesan Tuna Helper (includes sauce mix, noodles, but I don’t use butter and milk as they suggest); or, 2 cups dry noodles and your own seasoning
1 3/4 cups boiling water
½ cup MCT
1 cup non-flavored fat free yogurt or sour cream
2 ( or 3) 6 oz. cans tuna
Note: add mushrooms, asparagus, green beans, peas drained or whatever is free.

Heat oven to 425 degrees . Use ungreased 2 quart casserole and stir together everything above. Cover and bake 25 minute.
Five minutes before finished, stir to mix the MCT. Add grated parmesan cheese, crumbled crackers or bread crumbs on top and bake uncovered the last five minutes. Let sit for 10 minutes before serving.

Adustments

I am self-conscious in my own home now. I realize that when I don't follow these procedures, Sweetheart gets confused or frustrated. Then I get tense. As I wrote earlier on this blog, I am in training as a caregiver.

From experience with my Sweetheart's demenia I have learned to write things down. Pictured is the visor on his car. It is a small white board. I can write on this. He also is very dependent on the calendar and crosses out the days.

A nurse who works with Alzheimer's patients also told me:

• Give him one idea at a time.



• Use short sentences.



• Continue routines.



• Learn habits now such as GPS for the car. Maybe I should buy this birthday gift for him early so he can practice using it to get home.

The nurse said that patients light up when the loved one who sees them often comes to visit.

Springing Surprises / Not Remembering

Strawberry Festival. I asked my husband could we go and then I mentioned often about our tickets for this local event and that we were going to see a concert--Christian commedian/singer Mark Lowry at that festival. The day arrived and my husband came home from work at 2:30. He didn't remember about the festival, and wanted to stay home. When I mentioned I had already bought the tickets, he agreed to leave the safe haven of the couch and TV, and we went and had a delightful time. He didn't walk around the festival as much as in past years, but let me go off to see the booths and then check back in with him.

House Painting. Our house needs painting. My husband had always said he would paint the house, but he doesn't have the energy now and quite frankly it would be confusing to him and stressful for me to have him on any big project. But we do have a great painter/carpenter we have worked with before. Several days ago I chose new house paint colors and asked my husband about them. When we went to Home Depot, he hadn't remembered about the new colors--isn't the house going to be the same black and white? I needed again to sell him on these colors. We ordered several small items needed in the project. On the way home we drove by two houses with those colors. He liked them. Visualizing is so important. I will return to buy those colors within the week when the painter is ready.

(One day one of us may have to sell this home and it needs to be in good condition in this financial market so it can be sold. I have been a widow once, and always think of the future now.)

Memory. The other morning my husband mentioned that he didn't think he had a memory problem. I guess I am glad he is happy and doesn't think so. However, I am constantly thinking about his memory now, how I can run things by him, how he can have a say, and I won't spring things on him. So far he is trusting my judgment on most things. Lots of new thoughts for me now. How can I apply biblical respect for my husband in our situation? How can I maintain his trust?

From Proverbs 31. "The heart of her husband trusts in her, and he will have no lack of gain. She does him good, and not harm, all the days of her life." Lord, help me to do him good all my days, help him trust me, and guide me in this new phase of our life together. Amen.

Caregivers

http://www.alz.org/

I found helpful insights from The Alzheimer's Association. Many insights apply to me now, many will later and many for care givers who read this blog. I am thinking of a wife and two daughters who read this blog and are dealing with Alzheimer's for their loved ones.

Symptoms of Caregiver Stress include denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration and health problems.

• Anger. I have come to not get angry about being asked something again and again. Originally I was angry about my husband not picking up on tasks around the home. Yesterday my sweet husband on his day off cleaned the living room carpet. I didn't ask him to do this, but he knows to contribute and often tells me how he appreciates all I do for him and our dog Ziggy.
• Social Withdrawal. I need people and so this is not a symptom of my stress yet. However, I have noticed that my husband didn't want to go to the neighborhood Christmas party and doesn't want to take road trips out of town now. This can become a problem for me. Thank God for this blog. I do need you all to make comments and post.
• Health Problems. Once again I need exercise and a slow diet to lose weight so I don't get major health problems myself.

Ways to Reduce Caregiver Stress from Alzheimer's Association

• Know what resources are available in your community.
• Become educated about Alzheimer's disease and caregiving techniques.
• Get help from family, friends, and community resources.
• Manage your own level of stress. I say simplify, organize.
• Accept changes as they occur. Last night my husband and I saw "On Golden Pond". We discussed how actors Fonda and Hepburn were handling old age. How poignant it was when Fonda says he went a certain distance from their rustic home and then didn't know how to get into town. Hepburn sweetly accepted this. My husband has trouble with directions now. We have also seen and discussed the movie "The Notebook". Now, granted, sometimes my husband doesn't remember the movies, but I believe honestly discussing movies help us as a couple to deal with his dementia. It helps me accept.
• Engage in legal and financial planning.
• Be realistic about what you can do.
• Give yourself credit for what you have accomplished; don't feel guilty if you lose patience or can't do everything on your own.

Finally Alzheimer's Association writes to us caregivers: "You can live a meaningful and productive life by taking care of your physical and emotional health, by engaging in activities you enjoy and by spending time with family and friends."
Just a footnote from me: Dogs and husbands with memory issues live in the moment. They enjoy each moment and don't worry about the future or the past. Great lesson for us all. Thank you Lord for my daily blessings--for now--for this very moment!

New Year's Day

We didn't stay up to see in the new year. When my dear husband and I woke up at 3:50 am, we wished each other Happy New Year, discussed that it was 2009, etc.

He is working today, but he failed to think about the fact not many people would be at the bank today where he is a security guard at the main desk checking in people. Usually on Saturdays or holidays his work is so slow and he brings his portable DVD player, but he forgot today. I think I will bring it to him so he can have something to do today. Or, should I bring it? Teach him a lesson?

Often I forget things also, and that teaches me a lesson. For example, yesterday somehow I did not have my cell phone in my purse or plugged in. I found it under the pool table where dog Ziggy hangs out with his toys. Ziggy found my cell phone (I don't know where) and chewed it so that his small teeth marks are in the metal and slobbered on it. Consequently you can call me on that cell phone, but the speaker doesn't work. I can't answer or call out. I can just text message until I get a new cell phone from Sprint or call on the home phone or my husband's cell.

We enjoyed the movie "Marley and Me" and have since remembered it. Ziggy's stealing of my cell phone is like Marley and we laugh about that.

Like the incapacitated cell phone, so much of my husband's dementia we can cope with. We just work around it and take one day at a time.