Aha Moments in My Caregiving

Not to sound like a braggadocio, but my hubby was great and knew he had a problem. I had to change and learned to take those changes in stride. 

Caregiving.com asked for seven caregiving moments. I actually took the time to read through a lot of this blog. 

One 

Meeting another couple I call “Sally and Jake” (their names on my blog about my husband’s Mixed Dementia) and our doing things together so the Alzheimer’s husbands bonded. Meanwhile Sally and I had support from each other when we did things together. Our husbands went to a senior center together and this would not have happened if they had not first bonded. Jake is not able to go to the senior center without my husband because they used to do this together. 

Two

Using coconut oil that seemed to calm my husband, although it didn’t cure the disease as he passed away June 23 of this year. 

Three

The realization that I was in training since I couldn’t control his disease. I had to change and I often didn’t feel at home in our home because I had to make so many adjustments.

Four

 Handling difficult issues such as driving. I worried and worried. In the end after passing two Alzheimer’s driving tests funded here in Florida, my husband decided on his own that he wished to be a passenger.

Five

 Dealing with Urinary Tract Infections (UTIs) and incontinence.

Six

The medical community not understanding my husband’s not being able to walk. At first they thought it was a torn ligament. Then arthritis. A chiropractor helped until several months before he died. Really, not walking is part of a later stage of the disease.

Seven

The incredible help of Hospice so he could die at home and the amazing help of volunteers such as Kenny and Pharis that enabled me to keep working until several months before he died.

~ ~ ~ ~ ~ ~ ~ 

I am so glad that I decided to keep blogging after my husband was diagnosed. I look back on so much life that we participated in even after that diagnosis. I am so grateful to our LORD for taking me through, even as I grieve now for my husband. 

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

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. 

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. 

Smiling and Laughing

From Natural Solutions Magazine

Even though we are a Hospice household now, it is not ALL downhill. There ARE things to laugh at and things that bring a smile. I decided to record some this week.

Smiles. I have been so encouraged by the prayers and contacts from others. The comments on the last blog post here are just a small fraction of prayers and concerns from others including Facebook comments. We all are learning about the progress of this disease and every dementia patient has a different course. When you have seen one Alzheimer's patient, you have seen ONE Alzheimer's patient I have heard in Alzheimer's Association workshops. Certainly DH and our friend Jake are different.

A funny. Hubby is social and easily adapted to people coming into the house that are new to him. So pleased. I was on an errand on Wednesday, and when I came home a hospice aide was skillfully giving him a bed bath. Now hubby has a quick wit. Here he is naked with another woman.

Hubby: This is my new girlfriend.

Me (his wife chuckling): Does your wife know about her? 

Hubby: No, I don't think I will tell her. 

The aide was aghast that he said that, but I assured her it was part of his humor that I love and that he wasn't flirting with her and I was not upset he said that. Later he forgot all about this funny incident when I told others.

Wednesday continued to be interesting as I adjusted to suggestions from the nurse. I had to buy a twin bed for me to be put by my husband's hospital bed. Not worried about his walking as he was watching TV in his wheel chair, I went on a second errand to pay for that twin bed I decided upon. Wrong! I should have worried.

When I got home I found Jake, an Alzheimer's patient himself and dear buddy of my husband, sitting watching TV when I entered the family room through the garage. Hubby was not in his wheel chair.  He forgot he doesn't walk well. Ahead of me down the hall was hubby on the floor in the master bedroom. Do not put one Alzheimer's patient in charge of another one without someone else being there!  I found two strong neighbors (men who are relatives of Kenny who is out of town) to lift up hubby.

Do you have people in your life who do not text now and you so wish they would? Probably they know something the rest of us don't know because they have a simpler life. When Sally returned to pick up her husband, I teased her about her lack of texting skills. We always go round and round about this issue. I would dearly love for her to author here as well. However, her granddaughter is scheduled to review a teen novel that features a grandfather with Alzheimer's.

Me: I so want to be able to text you, Sally. 

Sally (repeating what she had said other days): I know, I know, I need to learn to text. 

Stay tuned, folks, there might be a whole hilarious blog post on our texting each other about our husbands--neither one would ever get into texting.

Wednesday proved that no longer can hubby be alone. I do not know that he would call someone if he fell. Jake, on the other hand still uses a cell phone and Sally is glad because he can be the wandering sort. She can call him. AD patients keep teaching us about their disease.

With Jake picked up by Sally and hubby not injured from his fall, I settled in to fix our dinner. Hubby had to poop and so I wheeled him to the master bath which has more grab bars than the other bathroom. Dinner would have to be warmed up later and he would stay in the bathroom a long time.

Got a call from our pastor. He and his wife were coming over. Cool! Soon I was talking with them in our family room about the stress of the past few days. Hubby was still on the master bath toilet. The pastor's wife was sitting on the part of a couch that looks down that hall to the master bedroom with an open door.

She saw more than our
dog, I'm afraid! 

Suddenly there was a streaker! Hubby streaked to the bed within eyesight of my pastor's wife!  I haven't discussed this with her, but she reads this blog and might clarify if she did in fact see a streaker! Horrors!

Can you imagine your pastor's wife 

seeing your half-naked hubby
 down the hall streaking!

And that dinner! I fed it to him when he was in bed after company left. I am starting to realize I need to catch him at the best times for his nutrition.

I am glad that he is walking more, but he forgets he has fallen in recent days and really should not get up from the wheel chair. It has become evident that someone needs to be with him to be his memory and to help him not fall. He needs a sitter if I am not there. My working days are over unless I get a sitter. Kenny cannot do this all the time.

Teen Alzheimer's sitter. Late Thursday afternoon I commandeered two teens in the neighborhood that know us (I have substituted for them also) and fed them and hubby ice cream when I went out on an errand. Sure enough hubby got up to walk to the bedroom! The reliable teens were by his side. In the bedroom he forgot why he was there and they brought him back to the family room.

Apparently that chiropractic visit on May 7th before Hospice was starting to work now--hubby is walking. What Dr. Robyn has done for hubby dramatically helped him last year as I recorded HERE.   Her strategy has been to stimulate the nervous system and the muscles and organs to function. So just maybe, when Kenny gets back in town, we may be able to take hubby to church and back to see Dr. Robyn who has helped his functionality since last fall. Note that because of his level of activity and Alzheimer's, the decision was made last July to treat the arthritic bone problems with pain relievers and to give him physical therapy at home. Surgery for a torn ligament is not always recommended and it wasn't for sure that he had a serious torn ligament according to that MRI. But the knee is arthritic and he does take pain medicine for it.  See HERE. Also, see this USA TODAY STUDY. Alzheimer's can indeed impact the walk of our loved ones.

I get to stay home more. I love our home, and it will be interesting to see how the LORD is providing for our finances with my not working. I love that hubby is not in a nursing home now and I would hope he doesn't have to go to one because of the help of Hospice. More on that later.

Putting a smile on the faces of others. I rap for others. I say I'm almost 70 and would you like to hear a rap? Hospice staff love it--our main nurse looked up my rapping channel on YouTube. Young clerks and bag boys who serve me at a grocery store love it; if they ask can I carry out the groceries for you I say only if I can rap for you. Those teen babysitters love my raps. It's kind of a diversion for me. I am also starting a twice-a-month Bible study for several women--something I wouldn't be able to do if I continued to work so much. And, I do hope I put a smile on your face when you read this.

from Dr. Isaac Eliaz

A merry heart makes 

a cheerful countenance,

But by sorrow of the heart 

the spirit is broken. 

Proverbs 15: 13