Another Quilt for Another Grandson

I finally had time to work on his quilt while I stayed home. My husband's grandson sent me this picture of a pillow on a Facebook message earlier in the year, so that was the idea I had to work with for his quilt.  

His older brother and his bride got one in 2009 at their wedding with their chosen colors.

His sister received one HERE last summer and next oldest brother received one HERE in January. It was his turn--he is the next oldest. 

Now it would be impossible to put a white or rounded edge around quit patches as pictured in the above pillow, so I had to work with the same colors with a black background. Unfortunately I didn't buy enough black material. So I went back to JoAnn's and bought more. Although it was the same fabric, it was different black because it was not off of the same bolt. So the darker black is on the top of the quilt you will see below. 

I found an Irish design and the grandson liked it. His mother has some Irish blood I believe. 

I cut out the squares using a rotary cutter on a green rotary mat made for this purpose (OLFA makes these). This mat was much more suitable than the plywood I used before. 

Put front together on vacation

On vacation at my family's home in March, I laid out the quilt  The front of the quilt was ready to be put together when we returned from our trip.

Again he wanted pockets in his quilt. He and I decided to use that karate material his brother had for some of the squares. One of my husband's shirt pocket is at the top, and, like his brother's quilt, a jeans pocket is on the back. The pockets can be used for cell phones or whatever. The grey pocket fit into the design. 

The back of the quilt is what gives this quilt warmth. I did not have to use other batting as I found a great zigzag fleece fabric in grey and red. When I substituted in art one day, the students loved the pattern of the quilt--so I guess it is modern. But I did encounter bunching up of material with that fleece so the top stitching did not go as planned and the whole project slowed down even has my husband's caregiving needs increased. This fleece is not as sturdy in stitching as cotton is. To give the quilt more color I chose a fun material for the binding and used the same technique as I have for other quilts, mitering the corners as I did two years ago HERE. 

Ta da! 

Below is the finished 
quilt ready to mail.  

Front and back with red & black binding;
jeans pocket on back for cell phone

Grandpa and Ziggy in background

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. 

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

Hospice

OH THIS IS SO HARD!  

I AM GRIEVING.

Hospice doesn't just have to be for the last days, but maybe for days like I am having near your loved one's end. Hubby can't walk. Can't get him showered. Incontinence. I solved one very small bed sore with Vaseline, but what if they return?

Every day lately there has been decline.  Yesterday when 2:30 rolled around and hubby was soaked with his own pee and I couldn't get him out of bed, I called Hospice. Matthew from Hospice was here at from 4 pm to 6:30 pm yesterday to interview me and see my husband. He even talked with Kenny on the phone. He qualified and we are enrolled.

Yesterday before Matthew from Hospice came,  I went briefly to town. I stopped at the Plant City Senior Center to sign two forms they had called me about. I cancelled my husband's coming there again today and said for the foreseeable future I couldn't see his coming there. I went to his doctor's office to deliver pee I had saved in the refrigerator in a plastic bag from before he took the antibiotics for the UTI. They wouldn't take it--wrong container. I threw it in the trash.

I texted my pastor and family members and several family have called. My pastor texted me last night that I had done the right thing. Brenda from TN and Sherry from my church emailed me this morning.  Ruby from Australia wrote on the last post. Thanks!

It turns out hubby has a new doctor now--a Hospice physician named Dr. Adria Stephens. Hospice will cover some meds but not all--no more Exelon Patch and Namenda. These preventative medicines weren't effective anyway at his stage. Hubby won't even remember about Hospice coming to the house yesterday afternoon.

Hospice evaluated him at stage 7c. There will be a team of people that come to the house. I look forward to meeting what they call Team Aqua. They will even send a chaplain. A nurse will come every four days. A Hospice aide will bathe him. They will provide him with a hospital bed when I say so and I will buy a single bed so I can sleep by him.

This morning I had to gently let my husband down to the floor in our bathroom because I couldn't get him a few more steps to the wheel chair outside the bathroom. I placed a pillow under his head.  One phone call this morning and I had the fire department that Hospice called help me get hubby to his wheel chair and ready for the day.

I reminisce below about the last times I have had with hubby as I have carefully kept this blog and evaluated my Facebook postings.  

• In December of 2008 when I started this blog my husband was diagnosed with dementia, the umbrella term for many conditions. He was officially diagnosed with Mixed Dementia in October of 2010 and the neurologist was surprised he still dressed himself and the Byrd Institute was surprised I was giving him coconut oil (now they have a study about it). 
• It has only been within the last year that I have been selecting his clothes and doing more of the dressing. Since Thursday when I cancelled substitute teaching, he has been wearing loose jogging pants and T-shirts which he can also wear to bed as PJ's. They have to be changed when he pees through them. 
• Camping has not happened since Memorial Day of 2012. My family provided a respite cruise for me in while hubby went to Virginia to stay with his son also in 2012. We also went to Virginia for Christmas of that year. 
• The last special dates were last month as recorded HERE—April 22 a concert and April 26 a b. d. party for two sibling dogs. 
• The last movie we saw together was "God Is Not Dead" on April 3rd in Lakeland. The last anniversary we celebrated was our 14th when we went to  Carrabba’s Italian Grill Restaurant in Plant City. 
• The last time we went the chiropractor and the last time we went to a restaurant was May 7th--last Wednesday. After the chiropractor, he hobbled into the restaurant and I couldn't see that going to the chiropractor who had been helping him was effective. A lady at the next table at Sony's BBQ told me that there are straps I could get to help me get hubby up from the table--check a medical supply place, she said. Hubby was just starting an antibiotic for a DUI, but walking was not to be. Every day since the walking has declined. He has finished the antibiotic as of this morning. 

She does him good and not evil all the days of her life. 

Proverbs 31:12 

I need Hospice to accomplish that verse. I hope to "do my hubby good", concentrating on what I can do and what he can do, enjoying his smile, humor and our love for each other with more time together than if he were in a nursing home wishing to come home. Already this morning we have told each other we love each other several times. With Hospice I can probably keep hubby home until [gasp] he dies and his soul is immediately with the LORD waiting the resurrection of the body when Christ returns. Hospice is a reminder of grief, but as a Christian I do not grieve without hope. But I am going to cry.