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

Precious Last Days

Photo by Chris Noren in Hawaii

Last Thursday, June 19^th, the Hospice nurse read to me from the booklet. She saw the signs that the end-of-life was approaching and of course the Hospice policy is to make death as comfortable and humane as possible. He was dying, so gaunt, but the morphine made it so he wasn't in pain. Please understand this.  

It was time for a relaxing medicine and for morphine--every four hours. My neighbor, Kenny, who has seen deaths in his extended family in the past month, helped, giving those first doses to my husband--even coming back every four hours through the night. Another hospice nurse came out and he gave me further instructions on the medicine such as how to fill the syringes. I practiced this. After that nurse gave me confidence to administer the meds, I did--a very, very hard task for me.

Friday morning, June 20, the Hospice Home Care Aide came as usual. She is very competent but I also helped her. It helped me cry. He was awake with the bed bath and changing of the sheets and so I told my husband I loved him, Jesus loves him and there is a place in heaven, a home that Jesus has prepared for him there. He mumbled/mouthed that me loved me. This made me cry again because I was happy he communicated. My husband has been made comfortable.

Monday morning, June 23, the every four-hour alarm on my iPhone went off at 5:30 am to give hubby his medicines. Only when I woke up there was no breath and no pulse. I gave the medicine anyway just in case.  But again a warm body but no breath and no pulse. Then I called the Aqua Team of Hospice and within the hour a Hospice chaplain and a nurse came out to the house.

The nurse preformed various tasks including calling the funeral director. The chaplain let me talk. He also read from John 14:1-6 where Jesus said we should not be troubled because he was preparing a home for us in heaven. Thomas questioned this, even as every loved one questions death of a spouse.

Thomas: How can we know the way? 

How can I go through his pain of widowhood again? How can I too go to my Father in heaven?

Jesus: I am the way, and the truth, and the life; no one comes to the Father, but by me.

This is the essential good news of the Gospel. I have always known that since a child who at seven years of age remembers asking Jesus to be my Savior—my way to God. But it occurred to me that Jesus is the way to navigate the choppy waters of widowhood. His truth is in Scripture. There is life that will continue and one day I will be reunited with all my departed loved ones in heaven.

Then out of the Companion to the Lutheran Book of Worship he read this prayer:

Into your hands, O merciful Savior, we comment your servant, [my husband’s name]. Acknowledge, we humbly beseech you, a sheep of your own fold, a lamb of your own flock, a sinner of your own redeeming. Receive him into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.

After some time the black-suited funeral directors pulled up and put my husband on a gurney and brought him out of the bedroom. I had been carrying dog Ziggy, and the men stopped by Ziggy and myself. Ziggy licked my husband’s face and I kissed his cold face. Then before us they covered his head with the rest of the red cloth and brought him outside to a black van while I sobbed healing sobs. At midday the regular Hospice nurse came; she hadn’t heard the news and we hugged and grieved together. The aide who had come most morning heard the news and she came also later in the day to be with me and we grieved together. Such a wonderful team—those Aqua people. They let my husband slip gently into the arms of Jesus. He was ready.  

So how am I able to cope thirty-six hours later? Prayers of you all and Scripture.  For example, four women and I have been sending each other Scripture each day.  Georgene who regularly comments on this blog started it last year and then Betty came along. Soon there were two more, Pokeberry Mary and Kim. Here is a sample of Scripture I have been treasuring that I am meditating on now.

•   When I am overwhelmed, you alone know the way I should turn. Psalm 142:3 NLT

•   Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world. 1 Peter 4:12-13 NLT

•   You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. Psalm 139:16 NLT 

In the fourteen years of marriage with my now deceased husband, about half of them were about Alzheimer's. This blog grew along with my faith during those 7 years. I am grateful for those years. I am grateful that my husband is with the LORD now. As a Christian I have that assurance also according to 2 Corinthians 5:8 that to be absent from the body is to be present with the LORD.

Wanna Hang Out?

So now I am about to change my marital status on Facebook to “widow”, help prepare the memorial service program and bio, and begin to do grief work. I have been a widow once before and know Scripture that speaks to widowhood and those promises of our LORD to protect me.

Last night I hung out with a family from my church thoroughly enjoying the parents and the four children. I just asked them if I could come over. The youngest wore this T-shirt. 

Hanging with people and hanging with the LORD is how I will cope and heal. Scripture says he puts widows in families—even the family of the local church.

Bedridden Apparently

Hubby drinking Boost and Dog Chilling

The Hospice home health aide was here first thing this morning. I told her about the hard evening where Kenny and I tried to get hubby into bed last night.  Kenny has a bad back and his back was certainly hurting when he went home last night. The aide and I decided to keep him in bed until the nurse came instead of putting him in the Geri chair.

Before the aide left, the Hospice nurse came for her weekly visit and the two conferred about my husband. I told the nurse about the extra pain pill I gave my husband this morning (four hours after the 4:00 am one). It turns out I wasn't supposed to do that. However, she will now let him take Tramadol four times a day (every six hours) instead of three times. She ordered Liquid Tylenol three times a day.

She looked at that arthritic right knee and wondered if the ligament was worse. She is sending someone to X-ray it.  I told the nurse about the problems we have been having getting him to bed and about the night recently that his right knee leaned over the bed and he was in pain. That night I had to put a chair beside the bed with a pillow and an ice pack and he went back to sleep.

Had he fallen since Hospice? she asked.

Yes he has, I said as recorded last month HERE,  and he is increasingly less ambulatory. 

You see, folks, my good-natured husband had started recently to protest getting out of the GERI chair into the wheel chair and into bed.

"NO! NO! NO! NO!" 

May 27th it took one and a half hours to get him to bed. One night at 10:30 pm I went to get two strong men (Kenny's kin) to help get him to bed. I just thought he was stubborn and that this was the Alzheimer's NO sounding loud and clear. Hubby certainly is less able to explain himself. He didn't say that he did not want  to take a few steps between the Geri chair and the wheel chair because it hurt. I assumed the Alzheimer's stubbornness was kicking in. Now the nurse told him to stay in bed and I will begin that regiment of turning him every few hours to prevent bedsores.

Also the Hospice social worker made her weekly visit this morning. She was scheduled to come Friday, but the nurse alerted her to come today. She asked about my stress level and about my getting out of the house (respite). Yesterday was a hugely stressful day, I told her. However, I was happy to report to her about friends staying with hubby so I can go to church for our 2 pm Sunday service, and about Sally and Jim staying at our home for two Saturdays when I am contracted to work for a DUI assignment. The social worker is arranging some options where I can pay Hospice for respite. She was happy to hear that an application is in to the West Central Florida Area Agency on Aging which will take longer to happen. Hospice and this agency can work together. Kevin who represents this agency is in my Toastmasters club and he called Tuesday to get this in the works. Maybe respite will happen by the fall so someone can be with my husband while I substitute teach. Kenny is less able to help these days and you may recall that he has his mother to attend to and his own doctor appointments.

Verses I Am Meditating On

I canceled 20 days of substitute teaching in May and June and need wisdom for our finances that our resources cover the summer. Proverbs 16:18 reads Better is a little with righteousness, than vast revenues without justice. 

LORD, help me to be righteous with my little. Help me to be careful with our money. Help respite to come through so I can work for our bills. Thank you for provision in the past. Amen. 

Proverbs 16:9 reads A man's heart plans his way, but the LORD directs his steps. When this widow (me) married my godly husband in 2000, I had no understanding of how things would go. My heart had a plan for our senior years. I had a plan to fit into a new family and retire without having to work, but the LORD has taken me in the direction that He has chosen for me. In His direction I have seen His mercies every morning. It is not all gloom and doom (although there is anticipatory grief for sure). I know that my husband when he dies will be with our LORD in heaven and then reunited with his body when Christ comes back to earth. This is my hope as well. We senior Christians get to have this happen sooner than most believers. 

His Yoke Is Easy

Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light. 

Matthew 11:28-30

Christ's words are over my kitchen sink. I look at them often.

Many of the posts on this blog have been downright silly and humorous, but it is time for the rubber to meet the road with the serious days of dementia and caregiving and Hospice in our home ahead of me.

Okay, maybe a little humor--just maybe--as with the Hospice nurse below.

Hallucinations. Our Hospice nurse visits once a week--twice so far. I think her outfit is overkill, and she probably scared my husband who later talked about people in the house. I am not sure if people in the house represents his hallucination or not or if it is our nurse, but she could go Trick-or- Treating on Halloween in this outfit. She looked adorable in it.

Kenny and I had a conversation with DH Friday afternoon after I came home from substituting on March 23 and Kenny had been watching him.  Kenny and I assured my husband that the only people in the house were his wife Carol, buddy Kenny and our dog Ziggy. He seemed relieved that those "others" were gone.

Getting hubby to bed. Thursday, March 22, I could not get hubby in bed from that Geri Chair and it was 10:30 pm, w a a a a a a y past our ritual goal of an 8 pm bedtime. I finally got up the nerve to ask two neighbors to lift hubby to bed. Kevin and Angel were glad to do that.

The next day, March 23, the plan to get hubby to bed was that hubby would be in his wheel chair which seemed more manageable. The Hospice Home Health Care Aide had put hubby in the Geri Chair that morning and Kenny got him in the wheel chair. Even so it took time to get hubby to bed. I thought of the verse and how this disease is teaching me to slow down. We both as a couple did it with hubby getting off of the wheel chair, sitting on the bed and managing the scooting over on the Hospice bed. Then I put my left arm around in back of his shouders and with my right arm scooped up his skinny legs and lifted them in the bed as I had seen the Home Health Aide do it.

NO to food.  Alzheimer's patients eventually say NO because it's the simplest thing for them to say I have read. NO to food, if you can imagine it. No to pills. But if you leave things out for them to eat, it helps. Our nurse said that if you force-feed them the food can go into their lungs. Of course I don't want that to happen. I had an idea. I had Pretzel Chips and dark chocolate chips and I put them in a small oval plate for his lap.

Oval Snack Plate

He had a choice of what to eat. He ate the chocolate chips!

Pill problem. Now pills crushed in applesauce and pills crushed in yogurt aren't working. Lately I just have given him essential pills to swallow with water. Friday morning he did it for Kenny. Friday night I put the pills in his hands and it took a while, but he did swallow the essential pills I gave him.

Tears. Hubby started to cry Friday night. I asked what was the problem and he said he couldn't see. I didn't know how to respond, but was just empathetic.

Wetting the bed. I asked him how he was yesterday morning and he said wet. Five days Hospice takes care of this. Saturday and Sunday I do. Unlike the last post it is too hard to get him to the bathroom now --I am resigned to have him just wet or poop wherever. HIS BURDEN AND YOKE IS LIGHT. I have used that verse to do these tasks cheerfully.

A wet hubby sleeping in with dog Ziggy

Gone again.  Saturday I was contracted to teach a class for first-time drivers. A man from our church came over to be with hubby who had no trouble recognizing him. Hubby enjoyed his Geri Chair.  This time the pretzels, dark chocolate chips and Boost on the Geri tray didn't work well, but hubby did drink other liquids. When I came home I gave him ice cream and froze the Boost for another time. He was coached into getting into the wheel chair and and later I was able to get him into bed well before 10:30 pm as the previous night.

A new kind of Sunday.  I was not able to go to church today, because really someone needs to be home with my hubby. Since our church meets in the afternoon at 2 pm. I might be able to enlist volunteers to come on Sundays. When Kenny is back in town, he also goes to our church so he cannot be the person to watch hubby then. For several days Kenny will be housesitting for a couple who were married yesterday.

Cognitive skills. Because hubby has Vascular Dementia, the Byrd Alzheimer's Institute said,  he will always remember me and most others. Hubby said this morning that women should not have keys. So I gave him his keys, which might give him a symbolic sense of control. I had him put it in his pocket. We actually have simple conversations centered around the procedures for doing things, the layout of the house, our dog and that we love each other. He has even expressed that people pay no attention to the old folks such as himself. The other day Kenny asked him who the President was and what day it was and hubby indicated that he didn't care to know.

I am exhausted, even when I do get sleep.  But I remember that verse of our LORD and often look at that verse over my kitchen sink.

Thanks so much for your thoughts 

and prayers, folks. 

Carol

What's Been Working, Part Two

Alzheimer's Is a Long Road With Twists and Turns

What was working HERE two months ago at the end of March, isn't working now. More help is needed and we have it except for times I have to be gone and Kenny isn't available. We have been on board with Hospice now for one week. As Laurie, west coast caregiver whom I have also interviewed said in a March comment, you have to

ADAPT!

Laurie's husband is at home rather than in a nursing home--I keep learning from her even since our interview in the fall of 2012 HERE.


Adapting to NO showers. Before Hospice when I couldn't get hubby in the shower and volunteer Kenny was out of town, I used washcloths and Simply Right Adult Washcloths to clean my husband. These disposable washcloths have Vitamin E, Aloe and Chamomile to aid skin wellness (maybe prevent bed sores). I settled on Simply Right Underwear for Men for only $.41 per use as I recorded in a comment HERE. Brenda recommended those Simply Right Underpads for under the sheets and also an ear thermometer for checking UTI infections.  (All Simply Right products are at Sam's.)  I purchased an Instant Ear Digital Thermometer from Walgreens where I also got the UTI strips I wrote about HERE. With the thermometer two points above normal and you have a UTI.

Sam's and Walgreens need to hire

me to do a commercial for them. 

From now on Hospice will be providing these materials. With a bed bath five days a week from Hospice and that cranberry juice, perhaps hubby will not get UTIs easily.

Avoiding falls. Hospice provided a walking belt called a Universal Gait Belt. This was possibly what the lady at the restaurant thought I should use recently. You wrap the belt around your loved one and tighten with two fingers in it so you allow for adequate circulation when you secure him/her. Then you don't grab an arm and pull him/her by the midsection. As yet, I haven't had an occasion to use this belt.

New uses for equipment. Last summer when hubby was released from the hospital, he was sent home with a wheel chair and a walker. His walking improved and he didn't always need those. I had just been using the wheel chair and grab bars in the master bathroom. Now I put the half-opened walker in the master bath and I avoid a fall in there like the one when the firemen had to rescue him.

Walker and grab bar help hubby get to toilet. 

Cognitive changes. He asks about the second story and if this is his home often. No, Sweetheart we do not have a second story, and yes,  this is our home. I assure him we are home, but tell him he doesn't walk well and needs someone with him so he doesn't fall. When I took him driving on Sunday he had strange perceptions about the neighborhood. I just listened, but did not argue. He wanted to know the name of someone. I kept throwing out names I made up and finally he decided on a fictitious name he thought was someone from his past. Hubby wants explanations for how the wheel chair works and even how the bottled water works. I am an English teacher--not a scientist--so I come up with something easy to say. He can't accept long sentences anyway. He will often say you are not making sense. Kenny surprised us at our front door Saturday afternoon. He was back in town. An hour later hubby didn't remember that Kenny had been here.

Pills in applesauce.  I crush his pills and put them in applesauce and hand feed him so he gets his pills. I learned to not put cinnamon in it as he vomited that up. I tell him he has to have all the applesauce because the pills are there. The applesauce I use is naturally sweetened and it works sans cinnamon.  

Hospice doesn't do weekends and hubby is noticing changes and he rebelled and wanted to stay in bed in his pee on Saturday.  I stayed calm. In the early afternoon he was shivering and I could  finally convince him we needed to change his clothes. It had been so pleasant W, TH, and F to have a home health aide change his clothes and the wet bed. On weekends I do it all. By Sunday night May 18th I was a wreck and Monday morning was hard too before Hospice came.  

Earlier in the week our yard/maintenance man Pharis and his wife got our king-sized bed out of the bedroom and brought in my new twin bed that would be by his hospital bed.  The hospital bed was finally delivered May 20th. While waiting for that bed to be delivered, hubby has been sleeping in my new twin bed.  I have been sleeping on the family room couch and my back hurt from that couch and from helping hubby get around. I do not sleep well as I keep checking on him.  Sunday morning I left him alone in my twin bed soaked with pee because he was again grumpy. Don't worry--I am using those Simply Right Underpads when he sleeps on my  new bed. 

About an hour later he didn't remember being grumpy so we could start the day over.  I came back and said, “Good morning, sweetheart! Today is the day we go to church." Since he walks a little better I was able to get his wet disposable underwear off and bring him in the wheel chair to the master bathroom where he sat on the commode. I somewhat cleaned him and dressed him for our 2 pm church service and got him out by his Archie Bunker spot in the family room sitting in his wheel chair. A sign in front of him reads: 

Walk with someone by your side! 

That’s what we all have to do. Have someone by our side. Now with the new hospital bed and my twin bed, I can get off the couch and sleep by my husband's side tonight in a comfortable bed and he will not pee in my bed.

Ziggy likes the Geri Chair Recliner

Ziggy has claimed the Geri Chair recliner, but I can't get hubby in it yet.

The bed and the recliner are loaned to us by Hospice and clients have this furniture until no longer needed. Ziggy will have to adapt going between the hospital bed and my twin bed tonight. But you can teach him new tricks.

Thanks ever so much for your 

prayers and interest, folks. 

Hospital bed at left and my twin at right
are covered by a bedspread.