Twelve Days of Hell…

And I thought it was supposed to be close to the Twelve Days of Christmas. HA!!

Sorry to have worried everyone by my lack of posts. Thank you all so much for your posts of concern here and emails sent. Really, Mom’s fine. I’m fine…just totally frustrated and exhausted, and I didn’t want to write and be accused of “whining” by cretins (not you Alz and AW pals), who think they know everything.

Where do I start? Oh yes, the furnace. The furnace is still on the fritz. We thought it was fixed, but it stopped working again, and again, and again. Poor Tom, the furnace man, has been out here going on a dozen times to get it working. I feel bad for him. It runs for a while, quits, and won’t fire back up. He changed one part and after installing it found out the new part had a factory defect as well. Got another one and the furnace worked another two days. Can’t be that new part! Found out there was sludge in the fuel and the nozzle was plugged now too. He treated the fuel oil. It ran for about four days after a treatment then quit again. We put straight kerosene into the tank to thin the sludge. It ran two days and quit. This morning, Tom replaced the fuel line from the tanks to the furnace because they were plugged. It ran five minutes and quit. Now, poor Tom is frustrated too. He’s getting another new different part right now, and we’ll see if that makes a difference. We’re both frustrated with this furnace, and of course the darn thing quits during the night when the weather is at the coldest temperatures. Ice cubes anyone?

In between the furnace issues, I called on November 23 (before any snow) to make an appointment for a local mobile tire company to come put new winter tires on the car on November 29. They didn’t show up or call because (of course we got snow on the 28th), they had a slew of emergency calls. A courtesy call would have been nice. I called them the next day and they rescheduled for Tuesday, December 4. Waited all day, no show, no call. Called around to get prices elsewhere and no one had the tire in stock. Called them back on the 5th (now we have a snowstorm), to find out when they would be out to install the tires and they told me to come into the shop and they would put them on. So, finally, by 3:30 December 5th I have winter tires on the vehicle and have 30 minutes to pick up Mom. :D

All the while in between all this, I’ve been dealing with these crazy night visits by some nasty old woman Mom keeps seeing. I guess she got tired of Mr. N., and we’re back to the old woman. Either way, I wish they’d both go visit someone else so I can get some sleep. I’ve been trying to catch a few hours sleep at home while Mom is at day care, but that’s not working out well because I’m not one who is able to sleep during the day no matter how tired I am. Have a call into her doctor to see if there’s anything he can recommend for her to take to get some sleep and get rid of these visitors. (I wouldn’t mind so much if they would do some housecleaning, errands, and work while they’re here. LOL Yes, that was my attempt of being humorous.)

Then, since it’s been doing nothing but raining in between the cold and snow, we have a muddy mess in the driveway. So we had to call in for gravel to keep from sinking in the mud. That seems to be packing in fairly well so in the next few days we’ll be calling for more to give the driveway a better base.

And then, we have to deal with those hunters Betsy mentioned. You would think that people who post their own land with no trespassing signs would not trespass on someone else’s property to shoot a deer. But…no, we have ignorant people who not only trespassed off their property onto ours, shot the deer, drug it on our property down a gully, across my neighbor’s front yard, down our driveway, and had their buddies pick them up at the bottom of our drive. Of course, I know who they are but I couldn’t do anything because they pulled all this while I was picking up Mom. When I got back I saw the truck pulling out of our driveway, I saw the bloody drag marks everywhere, but they were long gone before I could get the license number and make of the truck. I can’t stand ignorant people who think the law only applies to others or when it’s convenient for them.

On top of that, I have a friend who is going through a very rough time right now and she has me worried sick. I won’t go into detail about it, but please keep her in your thoughts.

So, I’m sitting here typing with finger-tip-less gloves, freezing my rear end off, waiting for the furnace to be fixed, worrying about my friend, hoping Mr. N., and the nasty old woman finds someone else to visit, wishing it were spring, and wondering if I’ll ever catch up on the sleep I’ve lost. Other than that, it’s the same old thing on a different day.

And…I haven’t decorated for Christmas. Merry Christmas everyone!

To Betsy

This morning I was happy that I was able to visit my Uncle Joe yesterday, Mom enjoyed the visit, and I actually found some time to finish writing a book review that’s been long overdue.

I’ve been busy with Mom all day; dressing her for the day, helping her with her bathroom needs, making meals, and keeping her busy. Weekends she tends to get anxious if I’m not sitting and talking with her or doing something with her. I managed to get the laundry finished and she helped me fold clothes, put them on hangers, and fold towels. She said she felt good helping with things because she doesn’t want me to have to do everything. I told her how much I appreciated her help and we sat for the rest of the afternoon working on word search puzzles and coloring.

Dinner is finished and Mom is tucked safely and warmly in bed and I thought it was time for me to catch up on my blog reading.

I went to Betsy’s blog first and found myself in tears when I read that her mother passed away over the weekend. I haven’t met Betsy personally, nor have I met Lori, Nancy, Terry, or Shirl, and many of the other caregivers I link to on my blog, but the relationships we’ve made through our writing about our journey with Alzheimer’s has been a rewarding one. We’ve become family to each other.

We’ve experienced similar drawbacks in our care giving, shared our concerns, even passed our phone numbers on to each other, yet we hesitate to make that call because we know how busy everyone’s day can be.

Each of these wonderful people have shared their journey right through to the end and it’s the end that saddens me so much. Shirl’s Bob died on April 27, 2007. Lori’s Helen died on Monday, September 17, 2007. Nancy’s Russ died on Thursday, September 20, 2007. Terry’s dad died on Friday, September 21, 2007. And now Betsy’s mom died on Friday, November 2, 2007.

Each have become very important to me and hold a very special place in my heart. Each giving of themselves in a way no other could. Some of us have common interests, some have common lifestyles, and some even have common superstitions. Thank you all for being the special people you are.

Betsy ran across my blog on August 20, 2007 and commented, “It seems we share many common traits: full time caregiver for an AD mom, freelance writer and Pittsburgher. I'm delighted to "meet" you!”

Besides being caregivers for a loved one with Alzheimer's, Betsy and I do share common traits, even past those things she mentioned. I was delighted to meet her as well and she’s held a very special place in my heart since. We’ve kept in touch through our blogs, and she was so kind to take time out of her busy day to send copies of the Reminisce Magazine. I thought it was very sweet and thoughtful for Betsy to share with my Mom something that her mom enjoyed for so long.

Today when I read Betsy’s words, “Those were our last words to each other,” I knew without reading any further her mom had passed and my heart broke for her. Through tears I continued to read her post about how she listened for her mom’s sleeping sounds through the baby monitor and my heart ached even more. So many of us caregivers can relate to the feeling of not getting comfortable until we hear our loved one’s soft steady breathing. We know the sounds of the bed, the different types of breathing, and when our loved one’s are sound asleep. Then we know we can relax for a short time, and maybe catch a bit of sleep until they call out to us during the night.

Silence through that monitor is something none of us want to hear. I could feel the numbness Betsy felt as she stood outside on the porch trying to gain the strength to check on her mom in the morning when she heard that silence. I can only imagine how difficult those moments were and how long they must have felt to her.

Crying, I reached for the phone and called Two Feather. He knew immediately that another of my friend’s loved ones had passed. He’s received several of these calls in the past six months. Two Feather understands the heartbreak we go through each day; he watches me hold back tears as I watch a part of my mom disappear as the days, months, and years go by. He hesitated for a second and asked, “Who?” “Betsy’s mom,” I said choking back the tears. He said, “She lives near here, doesn’t she? Tell her I said I’m sorry.” Then he hugged me and said, “I’m sorry. I know you’ve become friends.”

I must have had a distraught look on my face because he asked me what was wrong. Betsy’s post mentioned that the viewing was today and the funeral would be tomorrow morning. She’s so close, yet I realized I wouldn’t be able to be there for her during her time of need.

Betsy, please know that I’m thinking of you and your wonderful family and I am keeping you in my prayers. I may not be able to stand beside you, hold your hand, and give you that comforting hug you deserve, but I am there for you, my friend.

You were the template your mom used when she made those craft angels. ((Soft hugs)) I love you!

Longer Nights, Shorter Days

Today seemed to fly by more swiftly than Friday. Mom was up and down a dozen times during the night, rummaging through her dresser drawers, trying to pull off pajamas, going through clothes in the closet and trying to put them on over her pajamas, and using the potty chair.

She finally settled down about 3:00 AM and slept. Since she was up and down most of the night, I let her sleep until 11:00. She still seemed exhausted after eight hours sleep and ate very little breakfast.

The occupational therapist called at 11:45 and said she had one more visit with Mom and wanted to know if she could come by then. She was here by noon. She worked with Mom on arm exercises for about 45 minutes. Amy was very sweet. She left her cell phone number and told me to call anytime if I had any questions or when Mom’s situation changes and she needed more care. She’s a very sweet and caring person. All of Mom’s therapists and nurses have been wonderful. This was the last visit today. Mom’s been discharged from home care because she’s reached her full capability.

After Amy left, Mom and I sat in the living room and I read her the recent letter from her friend. I put Mom’s writing tablet and pen on the snack table in front of her so she could write a letter back. For the past several months, I’ve had to give Mom ideas as to what to write. She’s not been able to think or concentrate enough to figure out what to say in a letter. I’ll jot down a few notes on a piece of paper, tell her to write about those things, and I’ll come back in the room a few minutes later. She’s asked me to read the letter over to make sure it sounds okay, and I told her it’s fine. It took her two weeks to finally finish a letter to her friend the last time.

I called her friend to let her know that Mom has Alzheimer’s because I’m sure by now she’s realized that Mom’s letters are not the same as they used to be. She used to write long flowing letters about everything she did for the week and apologize for the length of the letter. Now, her letters are a half page to one page long, with repeated sentences, and apologies for her messy writing.

She said that she thought that might be what was wrong because Mom had written the same sentence over and over in several letters. She felt bad that Mom has Alzheimer's but she said she gathered that when Mom asked when her birthday was. Mom and her share the same birthday and began writing to each other more than 30 years ago through an ad in Workbasket magazine about birthday pen pals. She said she would continue to write, wished me and mom the best, and thanked me for the call.

Mom’s mind is deteriorating more and more. The few things she loved to do, reading books and writing to her friend, have become burdensome to her. She no longer reads, and she’s struggling to write.

Alzheimer’s robs her of a bit more each day. It steals her memory, her abilities, and it’s slowly stealing her pride in the lucid moments she has when she realizes she’s not able to do what she used to do.

When she finished her short letter today, she said, “I’m going to quit writing letters. I don’t know what to write anymore.”

She was mentally exhausted after two hours of trying to write 15 sentences. She finally finished her letter by saying, “Hope you have a real nice summer.”

Yes, I needed to call her friend before mailing this letter. I’m not sure how much more Mom will be writing, but at least her friend will know that Mom cares and is doing her best. I so much appreciate her continuing to write to Mom.

Mom wanted to go to bed at 3:00. She ate very little dinner today. I kept her talking and coloring until 4:00 when she began to doze off during our conversation. She was in bed and asleep by 4:45. The days are getting shorter. :(