Moneybags – Alzheimer’s in the Family

This has been a week. We came back to mom’s house as she was so fearful about hurricane Dorian. It wasn’t too bad here, just howling winds and rain. She was fearful here too but she was home.

Mom has had several good days in a row, which has been a blessing. Yesterday she was so lost and irritable. She slept a lot and asked me questions about her sister Gayle who died the first of June. She had such a sad day and was dwelling on things one minute and forgetting in the next and on to the next “bad” thing. There was no redirecting yesterday.

Her BP and pulse are staying pretty low. Heart rate has been steady around 45 for the last couple of days. We have a follow up with her doctor next week to develop a plan of management. With her not eating nearly enough, the options are few.

I cleaned her house yesterday and fixed the leak in the bathroom shower. I’ve become quite handy. It’s a necessity here in rural eastern North Carolina as we waited 4 days for a plumber who promised each day he would be here but he never came. Sigh.

Mom has decided she is going to stay in her house and to hell with anyone else’s needs and responsibilities. I told her that she would have to go with me back to the beach and she informed me that she has money and she will pay for someone to stay with her 24/7.

This is all very interesting as she has had to live on a strict budget on her fixed income just to make ends meet. I have been paying for house repairs and upkeep and to have her HVAC repaired, which was costly. She tells me now that she paid all those things because she has money. Something about her disease has her convinced that she can pay for everything. Expensive repairs, nice meals out, anything at any price. It’s really scary so she has no access to her finances.

One way that I handle her trying to pay for everything is that I tell her,”You paid yesterday, let me pay today.” So far that is working.

Mom got up early today and is having a day similar to yesterday. We just play it one day at a time, one hour at a time and play it as it lays. That is all that we can do.

More later.

Fears – Alzheimer’s in the Family

Mom did pretty well at home at the beach. She forgot about wanting to slap jaws and we even got her to go out to PF Chang’s for a late lunch on Sunday. Out of the 11 days we were there, we got her out of the house one time.

Mom fears leaving the house, showers, falling, and various other irrational things. Sometimes I believe she fears eating. Mom has always lived her life and made her decisions from a place of fear. Alzheimer’s has intensified her old and new fears. I’m learning how to manage her and make her feel safe. It isn’t an easy task.

Mom lost 4.4 pounds from 8/23 to 9/2. She just cannot eat, although she tries. Sometimes she even refuses her beloved ice cream. I offer food several times a day and have gotten used to her rejections. There are no arguments and no forcing. Just multiple tries each day.

Monday she decided she would make her own darn sandwich and didn’t want my help. She Rollatored over to the refrigerator and opened both doors and just stared in. Bread and deli items were in full view. After 5 minutes of her standing there with the doors open, I asked her if I could help. She said no and continued to stand there. She couldn’t figure out how to remove the items from the refrigerator. It was sad to watch. After 15 minutes, with the door ajar buzzer buzzing, I went over and made her sandwich. She laughed at me the whole time. I laughed with her. She ate 1/2 of the sandwich and was full. Such is our days.

Mom was getting worried about the hurricane, overly so. We had to limit the TV because it caused her so much stress. She calls it a hurrican and was sure we would all be killed, so, we came back to her house in Newton Grove. She’s still fearful about it here but there is no scary ocean outside. It’s all about making her feel safe.

We finished with the heart monitor on Monday. She did pretty good with it but was getting more and more aggressive about taking it apart. I was extremely happy to put it back in the case in one piece and UPS it back. It was a close one. Mom’s BP has ranged from 161/79 to 89/53 for several weeks. Her pulse for the last several days has been steady at 54. Hope the doctor can do something to help but if it’s from not eating, I don’t know how much they can do. We’ll see.

So now I must share a few concerns. The job I have is hard. It’s hard for mom. We appreciate all the kind words, deeds, and prayers. That said, we don’t need to hear negativity about how I’m handling things and what I should or could do or that I’m not doing enough. Stopping in for 15 minutes or so a week doesn’t give the whole picture. Calling for an update once every 60 days or so and then updating family and friends that everything is good isn’t helpful. It’s not your story to tell. Respect us and respect the decisions that have to be made. Build up and don’t tear down. I don’t have time for any of this and it certainly isn’t helping my mom.

I appreciate all of you and believe you are coming from a place of love. The fact remains that the decisions are on me and I’m doing the best that I can, taking into consideration doctor recommendations and support groups and being as educated as I can on this horrid disease.

More later.

Angry Bird-Alzheimer’s in the Family

We’ve had a pretty quiet week back at my home in Myrtle Beach. I’ve been to my own doctor appointments and worked on closing out Tom’s estate. I also managed getting someone to sit for mom (thank you Ilona) so that I could brunch with friends and visit. I’ve missed doing this so it was much needed for my sanity. I’m so thankful for my friends.

The orthopedic doctor finally injected my knee so I’m pretty much pain free. Hallelujah! I injured my knee getting my mom up when she fell three weeks ago. Everything is a process.

Mom still isn’t eating much. I have gotten some protein and veggies in her but she is still eating ice cream and pie and some sweet protein bars. Maybe 600 calories a day. She’s lost 3.4 pounds since last Friday. Her total weight loss since June 12th is 28.5 pounds, which is significant.

Mom has to wear the heart monitor until next week. We’ll be glad to be done with it. Her BP and pulse are still all over the place and her pulse didn’t get above 53 yesterday. A pulse of less than 60 is a big concern. Hopefully, the doctor can come up with a plan to help with that but the heart can react that way from not getting enough nutrition. We’ll see.

Day before yesterday, while I was at the orthopedic doctor, mom told Ilona that she wanted me to take her home and let her friends take care of her. She got pretty angry about it. Ilona told her that would not happen as someone had to be with her all the time and that her friends couldn’t do that. She also explained that mom was safer at my house, which is designed for aging in place. Mom hasn’t mentioned any of that to me but she did vent to my friend.

The day before that mom was in a “slap your jaws” frame of mind. If I walked by her she would glare at me angrily and say,”I’m going to slap your jaws.” She use to do that when I was a kid so it brought up some unpleasant memories. She also said it to the cats and dog. I eventually said,”you aren’t slapping anyone.” Just like that it was over. You have to remind yourself that it’s the disease. It’s still hard.

I washed and rolled her hair today and she’s decided to wear the curlers all day. No worries. What will that hurt? Nothing. She’s doing her word finds and I’m doing chores.

Tomorrow is another day. Let’s see how that goes. Love is the key.

But I’m eating so Much Food-Alzheimer’s in the Family

Mom went to her standing appointment for her hair do on Thursday morning. She came back looking beautiful. That afternoon I met with her PCP and we discussed end of life protocols and discussed a DNR. The doctor was so understanding and in agreement with what I proposed. We all know that mom’s prognosis is bleak and that lifesaving procedures will just exasperate the process and extend her suffering. Sometimes letting nature take its course is the best option.

Mom and I stopped by the doctor’s office on Friday morning to pick up her DNR form. We have to keep it with her at all times. She just knows that it is part of her paperwork in dealing with her disease. If she remembers that now, I don’t know. When I picked it up the receptionist cried with me. It is a real dose of reality to read it and see it completed. Reality set in.

After picking up the paperwork, mom and I headed back to my house at the beach. I have appointments and business to take care of. Life goes on no matter what you have to deal with.

On the trip down, mom was looking worried so I coached her to tell me what was bothering her. She said that she wanted to go to assistant living. That was a huge surprise. She kept talking about for about 1.5 hours. We both cried as we talked. She wants to go to Rolling Ridge, which is near her home. She doesn’t understand that when she goes it has to be memory care. Dementia patients need to be safe and assisted living isn’t enough. Memory care is a safer place and they provide programs that help Dementia patients. It doesn’t come cheap and has a base price of $6,400/month. Take out long term health care policies while you are young. Most families can’t afford long term care.

Mom has done well at the beach and is still having good days (relatively speaking). She has lost another 3 plus pounds this week. She got upset about it because, “I’m eating so much.” She is still eating 500-700 calories a day. Last night she ate homemade chocolate pie for dinner . Thanks Mary. We don’t care how she gets the calories as long as she gets them. She is still wearing the heart monitor and it’s been a chore to keep her from “fixing” it.

Mom slept in today and she is having some shortness of breath. Hopefully today will be a quiet day and uneventful. We don’t know how long we have on this journey, we are trying our best to do our best and that is all that we can do.

More later.

Vacationing – Alzheimer’s in the Family

Thursday was a good day. Mom got her hair done and had a full afternoon visit with Liz and Aunt Helen. It was a tearful but happy reunion. Mom was having a good day and was interacting, which was awesome. She ate ice cream for dinner.

Mom was tired and grumpy on Friday and I believe she was simply tired from all the Thursday activity. Glenda and Eugene came for a visit and they brought a great lunch with lots of fresh veggies and chicken. Mom ate a little and liked the food. She is eating about 475 to 700 calories a day. Not enough.

Saturday morning we left early to drive to Sapphire, NC for a vacation with our family. Mom was alert for the whole almost 6 hour drive. She is fixated on “tin roofs” on houses and redbugs (chiggars) when we drive through wooded areas. She’s had these fixations for about 2 months and talks about this at length, over and over and almost verbatim. I find it interesting. Deja vu, all over again!

It is great to be with my children and my grands. Mom has been very alert and talkative. Sunday was an interesting day. The kids went out for a hike to Turtle Falls. Mom and I stayed at the house. Mom was tired and complained about feeling funny. Her BP and pulse were all over the place. BP 161/79 with pulse of 57 to 88/62 with pulse of 145. She’s still wearing the heart monitor. The doctor thinks it may be A-Fib but it could be as simple as not eating enough to support her body functions. At this stage if it’s A-Fib why would one agree to implant a pacemaker? Feeding tube? What is wrong with letting nature take its course? NOTHING!

This brings us to today, Monday in the mountains. Temperature of 65 and beautiful sitting in the rockers on the porch. Mom got up, took her sink bath (she’s afraid of the shower and tub), dressed and she’s had her yogurt. She’s been asleep on the sofa ever since she had her breakfast. All this socialization has simply worn her out.

We go back home on Wednesday and I get to see her doctor on Thursday, without her. We have to sign some “end of life” directives. I don’t know how long we will have my mom but I do know she is and will be well loved.

More later.

Where is the Silverware- Alzheimer’s in the Family

Today has been a pretty good day. Got to appointments and got several chores done. Mom ate about 750 calories today.

The highlight was that 2 hours after eating 100 calories for lunch, she decided she wanted ice cream. She got up and took the Rollator to the kitchen and fumbled around. I asked “What are you doing?” She replied she was getting ice cream. She just couldn’t remember where the bowls and spoons were. I guided her and she found the bowls and spoons but she couldn’t find the ice cream in the refrigerator. I guided her to the freezer and it was a eureka moment. She laughed.

I was giving her independence and just watching over her. She got a little ice cream and then proceeded to put the spoon back in the silverware drawer. She enjoyed the treat and I washed all the affected silverware. No biggie.

Today was a good day. She almost fell once even with the Rollator. It was scary. She has been a little more alert today but in a world of her own. Each day is a blessing. I don’t know how many we have. We just make the best of things.

More later.

No Food for Me-Alzheimer’s in the Family

Mom has been having a hard time since last Friday, almost a week. She fell twice on Friday and has been weak and more disoriented. I took her to her personal care physician (PCP) yesterday as her BP and pulse were all over the place. Pulse varied from 49 to 94 in just a few hours.

The PCP did a physical, EKG, urinalysis and blood work. They told me to call her neurologist and move her recheck appointment from September to now. Mom has lost 16 pounds in less than 6 weeks. I can hardly get her to eat anything. She’s not hungry. We have added Ensure and I can pour it on ice cream if it helps to get it in. We all know how much she likes ice cream but sometimes she refuses that too.

The PCP ordered her a new walker and scheduled her to get a 30 day heart monitor to determine what is happening with her heart. We get that in the morning. Mom has been taking things apart for a while so I hope the monitor survives and we can develop a treatment plan.

I have a call in to the neurologist and awaiting a new appointment. Her PCP says there is a medication that may help her appetite. The neurologist needs to prescribe it but if he doesn’t the PCP will.

This is an interesting journey. No two days are alike. At present mom has extreme difficulty in walking and is very wobbly. She has no energy to do easy and routine tasks. For the past 2-3 days she says,”I know I’m going out.” When I talk to her about it she says she is referring to dying. She just knows she is dying. I always tell her, “Not today,” and that all of us will eventually die. She also speaks of leaving a debt burden for me, although I tell her she doesn’t owe anyone anything. My day is spent reassuring her when she expresses a worry.

So we go for the monitor tomorrow and we get results from all the tests so we can make a new plan. All I can do is keep her safe, love her and reassure her. We live each day as it comes. Thanks to the advice of a friend, I am approaching events and decisions from a clinical standpoint and using my heart to love her. It helps.

More later. Thanks for reading.

Wander Woman-Alzheimer’s in the Family

Yesterday started at 7:00 AM and it seemed to be a pretty good day although Mom thought it was 2013. She was excited about getting her hair did. When she returned home she looked beautiful, thank you Jackie.

I needed to go to town to pick up her prescriptions. Mom decided to go with me although she couldn’t remember where I was going. We took off to town for an adventure. Little did I know what an adventure it would be. We picked up the meds and headed to her favorite store for a little shopping. Shopping for me is picking up needed items. Shopping for her is hanging on to a cart for stability and looking, never buying.

We were shopping together and I was putting things in the cart. Journals, new pins, grocery items. Mom was just looking and looking. She asked me to get some storage containers from the top shelf. In the time it took to turn and get them she was gone. Three seconds tops. I called and looked for her but she was no where to be found.

I went to store management and asked them to page her and gave a description, including what she was wearing. They paged several times and I continued to look. Employees were helping me search for her. I was beginning to feel a little panicked and almost ready to call the police when we found her wandering and oblivious. 12 minutes of being scared for my Mom.

I had her stand beside me as we checked out and went to the car. She had no idea of the scare she put us through. Our fun adventure was over and we headed home.

I spent a couple of hours researching GPS items so we can track her it she wanders again. And. It will happen even with constant vigilance. I want to be prepared. This is what is being ordered:

When we got home I was exhausted but needed to cook dinner. I sautéed chicken breast with onion and stir fried squash, garlic, bok choy, and mushrooms. It was the first time Mom had ever eaten bok choy and she liked it a lot. She actually ate everything on her plate. She told me the meal was so good and that I was a better cook than she. She said it sincerely and with love. Looked like the day was ending on a better note.

Soon after the meal she began to cry. I asked her what was wrong and in a minute of clarity she said, “I didn’t want to go out this way.” We talked about it for a bit with me reassuring her that we would be okay. And. Just like that she forgot about it. The rest of the night was uneventful.

Today we started our day at 7AM. She remembered how to make coffee and had it ready when I came to the kitchen. She had a burst of energy so “we” washed her sheets, made her bed and were just putzing around doing odds and ends when she FELL.

I was right there with her but she wouldn’t let me help her up. In her stubbornness she fell forward the second time. She will be sore but nothing appears to be broken. She laid on the floor for a few minutes at my insistence. I could not get her up. Luckily Jackie was at the beauty shop next door and she came to help me. We got her up and into her chair and told her to sit there a while. Mom complied.

Mom’ cousins Glenda and Eugene were coming and bringing lunch (lunch was delicious thank you Glenda and Eugene). Mom was doing better but we all noticed that she was talking like a little girl and pouty. It is almost 3 PM and she’s still talking like a little girl and pouting. She is being quiet and withdrawn.

Each day is different and there are some difficult moments. We meet each of the days with love and patience. As it should be.

More later.

A Day in the Life – Alzheimer’s in the Family

Yesterday was an interesting day. Up at 7:30AM to meet the day. Mom has remembered for two days how to use her cell phone. After her usual Greek yogurt breakfast it was medication time. She came into the kitchen to get water and stood at the sink and said, she couldn’t get water. There was no glass on the counter and she couldn’t remember to open the cabinet to get one. She just looked around looking puzzled. I went over and opened the cabinet and there were the glasses. She had such a look of surprise on her face and a big old smile about the glasses magically appearing.

I had the neighbor look out for her so I could go to my doctor appointment. All went well and mom was packed and ready to go when I got home. We were going back to her house for a while.

On the trip home mom was talkative for the first time in weeks. She asked me a couple of dozen times where her medication was and I patiently told her each time. She said she wanted to drive her car when we got home. I reminded her that she can no longer drive. She wanted to know who said that and I replied that her doctor said that. She wanted to know why the doctor was only telling me and not her. The rub is that he did tell her.

She doesn’t believe that she can’t drive, live alone, or that she has Alzheimer. She went from being angry to crying. I told her not to worry because I would take care of her, it is our new normal. That didn’t make her any happier.

We finally arrived at her house. She doesn’t remember any of the conversation, that she got an award at church Sunday before last, or that we had been staying at my house. She “read” her mail as she sat in “her ” chair and she has reverted to not communicating.

She is still not hungry and will only eat a little bit of food (unless it’s ice cream). Sometimes she chokes when she tries to eat. We were up early today, 7AM, she’s back in her chair reading the newspaper and being very quiet. I can’t get her to eat her breakfast but she will eventually. She’s getting her hair did this morning. She’s tried to cut her own hair several times in the past week. We’ve had a lot of redirection going on.

Lessons learned this week: Move all knives to a safe location; move kitchen shears to a safe place, put pictures of what is in the cabinets on the doors (thanks Liz); get a baby monitor (thanks Michelle); put locks at the top of doors out of eye level; gin up the patience; and love with all your heart.

More later.

The New Normal, Living with Alzheimer Disease

Our journey is moving forward at a steady pace. Mom is doing okay and does her crosswords puzzles, criptiquotes, and word finds every day. Just a few months ago she could finish a hard puzzle in a matter of minutes. Now she struggles to finish one in several hours. She tells me how hard they are to do and I must be buying her the PhD level books. I’m not. Today, she has worked in her books for about 10 hours. I have to stop her so that she can eat lunch and dinner. She will be doing those puzzles until I tell her that it is time for bed, at 10:30 PM. Not much conversation today.

Mom doesn’t like to leave the house. I don’t push her but if I ask her to go with me and she says yes, we head straight out the door before she changes her mind. I took her and her best friend shopping for new outfits last week. They love having a younger chauffeur and Mom and Zona can be quite funny when together. While out and about, vigilance is important as she will wander away. I have to find items and give her two choices as she struggles with simple decisions and tasks. When we went to the dressing room, she needed help trying on the items. As we disrobed her to try the clothes I discovered that she had picked her skin on her torso and back. We (doctors included) knew she was picking at her nails, arms and legs but had no idea she was picking everywhere. Her arms, legs and body are covered in sores. The condition is known as Dermatillomania and is seen in the middle stages of Alzheimer Disease. No medicine seems to help her with this issue. The concern is that she will develop and infection and that would expedite her mental spiral. She will stop, at least for a little while, when reminded.

Mom picked a beautiful teal pants suit with a nice necklace and Zona picked a couple of items too. These outfits were for this past Sunday. Mom was going to be honored as Woman of the Year at her church and it was a surprise. We also shopped for hats as all the women were to wear hats for Crowns for Christ. We all bought fabulous hats. The shopping tired the friends out so they were pretty quiet on the way home. It was a good outing but mom doesn’t remember anything about the shopping trip and wondered where the clothes came from.

When we got to the church on Sunday, July 14th, Mom’s grandchildren, great grands, brother and cousins were there waiting. Mom got very excited that they were there but she still didn’t know that anything was up. During the service they talked about all she has done over the years for the church and community and then announced her name and asked her to come to the altar. She looked at me and asked, “Did you know about this?” I replied, “Why, yes I did,” with a huge smile on my face. Mom went up and received her plaque and a dozen variegated pink roses. They asked her if she wanted to say anything…… I held my breath as at this point in our journey we never know what she might say. Mom said, “I’m speechless,” with a big grin on her face. They took her picture and had the family come up for more pictures.

After the award, we were all invited to the fellowship hall for a large country food spread and some fellowship. Mom did well and everyone came by to talk with her and many told me how much they love her. It was a good event and mom was all smiles. When we went back to her house there were many visitors who came by to see her. The last visitors left around 6:30 PM, after Mom fell asleep in her chair. She was exhausted. It was a lovely day with a lot of smiles and hugs and kisses. Today, Mom doesn’t remember much about that day. That’s okay. All of us will help her remember (for a short while).

This week has been pretty quiet. Mom has been enjoying her puzzle books, ice cream and kettle chips, not necessarily in that order. Mom has adopted my cat, Scurry Murray, as her own and doesn’t want me to touch him. She has gone out with me a couple of times to run errands and we bought some lovely flowers. She loves flowers a lot but not as much as ice cream. I did her hair for her and she’s been getting her shower and wearing makeup everyday. Each day with her is a blessing and we try to fill her days with acceptance and love. She is a very special woman. She deserves better than this.

Mom and her birthday bracelet

I find this blog cathartic. Don’t know how often I will post but will as this journey progressives. This has been a good week, even with emotions being fluid as we try to come to grips with our new normal. Stay tuned for updates.