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.

Why Am I Losing So Much Weight? Alzheimer’s in the Family

We came back to Mom’s house yesterday after I finished with my appointments in Myrtle Beach. She had insisted on coming back the day before. We weighed mom yesterday and she had lost 3.6 pounds since last Tuesday.

She asked how can she lose so much weight since she was eating so much food. I explained to her that 500 to 700 calories a day really wasn’t eating a lot of food. She had an incredulous look on her face during that conversation. She has lost 22.6 pounds since June 1st.

After my last appointment yesterday, I loaded the car to come back to Mom’s. We had a “catastrophe” as we couldn’t find her purse. She told me it was in her suitcase so I went to the car and searched her suitcase to no avail. When I came back in the house she and Ilona were looking everywhere. Mom was in a panic, even though her ID and other important cards are in my purse as she takes them out often, along with her cash, to make sure she has them. She does it everywhere and it simply isn’t safe. She counts her money over and over because she can’t remember how much she has.

While she was Rollatoring around, I had an epiphany and lifted the seat to the device and there was her purse. Her face became a sunbeam with a large smile.

We had an uneventful trip home and today has been pretty good. I bought a few mini Baby Ruth bars and she will eat them. 50 calories at a time. Yay! Today she has eaten a little less than 700 calories and she’s been more alert but very confused. She was visited by her pastor, Corky, today and it was a good interchange.

She is facing her mortality head on and is sad about “leaving us.” She sits in “her chair ” all day and reads the paper over and over and works her word finds and puzzles. She seems content even though there is little interaction with us. Seems to me that she is just passing time until everything aligns and she can leave.

I have an appointment with her PCP next Thursday to talk and initiate end of life protocols. I’m at peace because we’re doing what is best for my wonderful mom. It is sad that this is happening to her and us but, you know, there are worse things in life.

I’m glad that I can be here for her. It is an honor to honor her during this transition. Please keep her in you thoughts and prayer, however you believe. We appreciate all of you.

More later. Thanks for reading.

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.

Not Acute-Alzheimer’s in the Family

Mom is alert today but still not moving from the sofa. I don’t think the Donepezil was responsible for the lack of appetite. She ate 1/2 cup of yogurt for breakfast and was full. For lunch she ate 5 small bites of chicken, 4 small bites of broccoli, and 3 small bites of cantaloupe. She simply isn’t hungry and says she feels full all the time.

We got a report on the MRI today saying there are no acute processes. While this is good it simply means that there was no new issue such as a stroke to cause her rapid decline. The neurologist will discuss the changes due to Alzheimer’s on our next visit.

They think her issues are wholly related to Alzheimer’s but to be sure we will be getting a chest and abdomen scan in the near future.

Things to be thankful for: mom thanked me for all I do for her and told me she loved me today. She is more alert today and not sleeping much. She seems to like being here and hasn’t asked to go home and she hasn’t talked about leaving me today.

She still is trying to fiddle with her monitor. Last night, at bedtime, she removed it and put it back on unassisted. The monitor started screaming as she had not really put it back on. I thanked her for helping me with it and got everything straightened out. She seemed pleased with herself and at least mom hasn’t taken the monitor apart yet. It’s a good thing.

Every day is different and has a new challenge. I’m looking into getting a ramp for her door as she tries to take the Rollator down the steps. We’re also trying to get a quote on a bathroom update to make her home safe for her. It’s hard to get anything done in that rural area and I wish we didn’t have to wait so long for good help. It will eventually come together and while I’m patient with mom, I’m not patient about things that concern her safety.

This is our New Normal. We start each day with no expectations and just take it as it is. More later.

It’s a Roller Coaster-Alzheimer’s in the Family

I brought mom back to the beach with me. I still have to manage my life while being mom’s full time caregiver. She likes it at my house because it’s quiet and designed to make it easy for her to get around.

The neurologist took her off the Donepezil on Tuesday. By Thursday she was more alert and actually eating a little more. Today she has eaten about 600 calories and keeps telling me she’s doing better. She is in some aspects but she’s still not eating enough and still has no energy. She likes to sit and nap and do her puzzles.

She is talking a little more but she is fixated on tin roofs, Trump (no more news in this house), and not being a burden. The only time she has left the sofa is to go to the bathroom. Today she knows it’s 2019. It’s a good thing.

Last night my friend, Ilona, kept mom for me to visit with my friend, Ray. Today another friend stayed so that I could treat myself to a mani-pedi. It was nice having time. It’s important. I feel more rested, which is good.

Worth noting: power bars and Ensure are a Godsend; patience is vital; and Alzheimer’s is a crappy disease.

I’m thankful for a couple of days of mom feeling better. That she knows who I am and she isn’t fighting with me when I’m trying to help her.

Now, if she’ll just not remove the heart monitor. That would be good.

More later.

Homesick-Alzheimer’s in the Family

It’s Wednesday, August 7th. I slept 9.5 hours and woke up exhausted. I got mom out of bed at 10AM. She is so weak today. Her best friend, Zona, stopped by with a coke and sausage biscuit and stayed for a visit. Mom ate 1/3 of the biscuit and was full.

We went back to the neurologist yesterday to address her downward spiral. I liked the associate that we saw. Seemed very competent. They took mom off the Donepezil and talked about how people with Alzheimer’s didn’t get better and the limited things that they can do for her. I told her that I understood all that but we needed help. She was just making sure that I understood the situation.

The doctor also told me to get help in taking care of mom as she didn’t want my heath to decline faster than mom’s. She talked to me about the toll caregiving takes on a person and for me to take care of myself. She was passionate about it. I know she’s right.

Mom has lost 19 pounds since the first week of June. It’s a 12% loss of weight. Over 5% loss is considered failure to thrive. The doctor ordered more test, the first being an MRI this afternoon. They are trying to determine if she has some other issue/s or if the brain damage due to the Alzheimer’s has affected the part of the brain that tells the body to process and use nutrients.

Yesterday mom told me that she was homesick. She was home, sitting in her favorite chair. So, now I’m thinking was she speaking of her heavenly home. I don’t know. She talks so much about “leaving here” and dying. Everyday. Yesterday she told the doctor that she was sad about leaving her family.

I have mom washed and dressed for her appointment and it’s 1 PM. She’ll rest until we leave at 3ish for her 4:30 PM MRI. Hopefully, they can determine what is going on. Next up is a chest and abdomen scan to rule out other disease. They tell me if she is in the failure to thrive stage, there isn’t much if anything that can be done and her time is short.

I don’t know how or what to feel. We get up each day and go forward and do what we can. Please keep us in your thoughts and prayers.

More later.

Ice Cream for Breakfast- Alzheimer’s in the Family

Mom has really been feeling poorly the last few days. I did manage to get her bathed and dressed today. First day out of three that she hasn’t stayed in pajamas. She is still not eating much, no matter what I try to feed her. We settled on two scoops of ice cream for breakfast today so that she could take her pills.

Each time I give her the meds she asks,”What’s all this? I only have one prescription.” She has been on 10 prescriptions for years. Pills morning and at bedtime. She resists.

She is still wearing the heart monitor and has not taken it apart yet. She’s confused about wearing it but mostly forgets about it unless she touches or sees it.

Mom has been in her chair for the last three days and only gets up to go to the bathroom a couple/three times a day. She takes her small meals in her chair too and moves from there to her bed at bedtime. She is so weak that she talks and cries (at times) in a whisper. I have been unsuccessful in getting her out of the house for anything except doctor appointments. She simply refuses.

Her blood work all came back normal. The results of the urinalysis just came back negative so there is no infection. Her rapid decline is most likely the Alzheimer Disease. We won’t have the results from the monitor for about 25 days but I know in my heart it isn’t her heart that’s causing the new issues.

Mom is still cursing, something that she hasn’t done in her previous life. She snaps at me a lot out of anger. I know it isn’t me, it’s her disease. She is weak and helpless, which is hard to witness. Each passing day reinforces what I already know. I will not be able to care for her at home much longer. I dread that for her but her safety takes precedence over staying in her house.

Her friends don’t understand why she just can’t go out to eat and shopping with them. They only see snapshots of her life when they stop to visit. They don’t know she isn’t following conversations because she can’t, or that she isn’t talking because she doesn’t understand what they are talking about. They seem to think that all I need to do is force her to eat, force her to go out, etc. All is can say is, “This isn’t how any of this works.”

We have an appointment with her neurologist tomorrow, in hopes of a new medication that may help her appetite. I think they will be surprised at her rate of decline since her last appointment on 7/13. We’ll see what they can do to help her.

Today we are making lemonade out of lemons.

More later.

Scrambled Days – Sleepless Nights- Alzheimer’s in the Family

This has been a week of adventure. My cousin, Glenda, came to care for mom on Tuesday. I had doctor appointments in Myrtle Beach. She stayed over night, allowing me to have a break for the first time in 2 months.

All went well and I came back to mom’s a little more rested. Being a caregiver to a loved one is hard. I’m showing more patience than I ever thought I could have. Caregivers have to be “on” 24 hours a day, 7 days a week. I sleep with one eye/ear open just in case mom decides to wander during the night. Showers are quick because things happen when the caregiver is out of sight.

I took mom to her PCP on Wednesday for a recheck. Something is going on with her heart. May be A-Fib. They ran an EKG, bloodwork and urinalysis to rule out infections, thyroid, etc. We have to cover all the bases. They ordered a Rollator walker and a cardiac monitor. Mom’s BP and pulse are all over the place, low to high so she’s been weak and dizzy. She is a fall risk. She kept telling the doctor,”I’m just wore out. All wore out.” She keeps talking about “going out of here.” When pressed she says she knows she is dying. I always respond,”Not today, mom, not today.”

My daughter, Jeremi, and my two young granddaughters came for a visit on Thursday. Mom was having the best day in about 12 days. She interacted with the Greats and stayed awake for the visit. She ate better and served everyone ice cream in a cone. Wow! I used this time to pickup her walker. She was too agitated to do that after her appointment on Wednesday. Mom told me that she felt better because she got two shots at the doctor. She did not.

I took mom in for her heart monitor on Friday at 8:30 AM. She asked me several dozen times where we were going and why. I answered patiently each time. Mom has lost her filter and I have now heard her curse for the first time. She is also saying many inappropriate things that she would never say before. We go with the flow. At this appointment she had trouble walking a few feet with the walker, shortness of breath and dizziness. The nurse had to get a wheelchair to move her and take her to the car. We are now trying to get a wheelchair. She simply can’t fall for a lot of reasons.

I explained to the cardiac technician that mom was in a fix it stage and that she may take the monitor apart. She has already taken apart a watch, CPAP, and a toilet tank. The plumber was here yesterday to fix the toilet. She keeps telling me that things are broken and she can fix them. The things aren’t broken until she “fixes” them. I can see this becoming expensive. I redirect many times a day but things still happen.

Mom’s screaming woke me up this morning around 3:00 AM. I ran in to her room. She was dreaming and screaming. I woke her up and she tried to speak but her words were all jumbled up. After a couple of minutes she could talk. She told me her mom was whipping her. She was so sad. I stayed with her until she went back to sleep. It’s 8:40 AM now and she’s still sleeping, crossways on the bed. I’ve been up since 4:20 AM. I just couldn’t go back to sleep.

When she awakes, I have to change the battery in the monitor and remove it for her bath. She forgets that she got the monitor and when she finds it asks me what it is. She doesn’t remember anything about this week and yesterday she couldn’t remember my daughter’s name. She is calling me Gayle a lot. Gayle is her younger sister who died of complications of Alzheimer’s the first of June. It’s sad to see her going through this.

Mom has also decided that she has unlimited funds and she wants to pay for everything. She constantly says, “I have money, I’m going to pay.” She is on fixed income and has always been frugal. I usually say, “You paid yesterday, let me pay today.” This seems to work now. We’ll see.

We are taking one day at a time. Doing the best that we can. We see her neurologist on Tuesday for an earlier recheck. Her PCP recommended that we not wait for her planned recheck in September. Things are moving so fast.

I know that I won’t be able to keep her at home at some point. Her safety is the main concern. I’m doing interviews now and forming a plan. It’s better than scrambling at the last minute and being under that pressure.

Thank you to all those in our support system. We appreciate you more than you know. You are all such a blessing.

We’ll see what today brings.

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.