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Up/Down and all Around – Alzheimer’s in the Family

Mom went to church again on Sunday. Charles went with us and we had a good time. After church mom wanted to go to Smithfield’s BBQ for lunch. She loved that restaurant although she doesn’t remember what they serve and she tells me to order for her. Sometimes she can’t remember the name of the restaurant.

We saw many friends there and they stopped by to gush over mom as she hasn’t felt like going out for weeks. She ate a few fries and 1/2 a bbq with slaw sandwich. When we got home she had to have a little nap.

I haven’t said much about it but for two days in the last several days my mom has called me Gayle. Gayle was mom’s younger sister who died the first of June from complications of Alzheimer’s. She still does from time to time. I believe during these times she does not remember that I’m her daughter.

Charles left Monday morning after a wonderful week stay. It was good having someone there with me and I slept good. I stripped beds after he left and caught up all the laundry. Mom wanted to go to McDonalds that evening to meet up with some of her friends that meet there. She hasn’t felt like doing that since June. She was a hoot and so were her friends. She played lottery scratch offs and visited. It was fun even though she didn’t win a thing. She can no longer understand the rules of the game and after I explained it, she still couldn’t believe she didn’t win. Our friend Mary said that she put the voodoo on everyone. It looked like she tried.

Today, we got up early and went to her doctor appointment. Mom does have Atrial Fibrillation and has an outpatient EKG scheduled for next Wednesday at Sampson Regional Hospital. Her pulse, while wearing the monitor went from 43 to 180. They started her on Zarelto. After the EKG, we are scheduled to see her cardiologist on 10/21, the earliest available appointment. Her GP believes that the cardiologist will want to give her a pacemaker. I have many questions before I can approve that procedure. It involves anesthesia and that may cause delirium. These choices are extremely hard to make.

After the appointment we came back to my home in Myrtle Beach. It was so good to get home. The cats have been very happy to see us. Mom isn’t too happy about being here but she has to come with me, I have a business and friends here. I still have an estate to settle. I do have a right and need to see my friends. Her only choice, if she doesn’t come with me, is to go into memory care. She doesn’t want that either. There will come a day when neither of us has a choice in that. I can’t keep going 24/7 with the current status. I’m tired most of the time.

Mom told me this week that she would just stay at home. She said she has money and that she would pay for someone to stay with her 24/7 and she would not go to the beach with me. It would cost $30/hr for a qualified person to stay with her. Mom has no money. She did come home with me without an argument but she had been pouting since we got here. That’s ok. I take no offense. She’ll either get over it or not. That’s okay. She is safe and I get to take care of overdue business and also get a massage for stress relief and finally get the oil changed in the Subaru, which is overdue.

Unfortunately, this trip will be short as I have to have her back for appointments in just a week. I would like for us to stay here until she has to go to memory care. It’s so much easier for me here. The hospital is light years ahead of the hospitals near her if we have an emergency. My house is handicap friendly. So many pluses but it isn’t HER home.

These are some of the challenges we face. All decisions are based in what is best for her and her safety. That is all that I can do. It’s damned hard.

More later.

Friends and Frustrations – Alzheimer’s in the Family

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Mom continues to have good days. Such a blessing. Last Saturday Amos, Chelsea and the boys came for a visit and brought lunch. Mom was engaged and played I spy with the boys. She was almost like her old self. She did ask the boys over and over about school but she was laughing and playing with them. It was a good visit. When she became overstimulated, she retreated into her newspaper and Amos and I completed a few chores. All the locks are now on the top of the doors for her safety.

As mentioned in the last blog, mom went to church on Sunday. She wasn’t able to go since she got the woman of the year award in July.

Tuesday mom’s sisters-in-law, Brenda, came and brought her teenage grandsons to visit. She brought a tasty cake and garden veggies. Mom has enjoyed eating them a little at a time. The visit was very good and mom also engaged with them. It was lovely to see.

Late Tuesday afternoon my cousin Charles came in from Decatur to stay several days with us. It was such a good homecoming. We got mom to bed about 11 PM and we stayed up until 1:30 AM just talking. It was good for our souls. It is great having him here with us and he engaged mom in reminiscing about bygone days. So much laughter and animation. ❤️

Wednesday mom got a her hair did, which included getting a much needed perm. Charles and I had 2 hours to run errands, etc. while mom was at the shop with Jackie. It feels amazing to have bits of time to leave the house and get things done and have just that bit of freedom. I have always lived my life the way I wanted. Out with friends, traveling, and just being able to leave the house on the spur of the moment. I will never ever take that for granted again.

Thursday was neurologist appointment day in Raleigh. We made a day of it and went to my son, Amos’s house and had lunch with the family. Mom played some ball with Silas when he came home from preschool and we had a good visit. Her appointment was at 2:30 PM across town.

The neurologist appointment was uneventful and disappointing. They did regular questions and spent about 50 minutes with us but would not do anything for her because we haven’t gotten results from the heart monitor. Mom is still losing weight so they want her GP to order gastrointestinal testing to make sure her lack of appetite isn’t something other than the Alzheimer’s. It seems we run round and round to this doctor and that doctor and no one knows much more when they leave than they knew when they came in.

We get the results of the heart monitor on Tuesday. Hopefully, something will be done about the low heart rate, but at this point, who knows. I’m supposed to call the neurologist after the appointment on Tuesday about any medication that is prescribed so they can prescribe a medication for Alzheimer’s that will not interfere with appetite and the heart meds. I feel that we are on a hamster wheel, spinning and spinning.

I guess the next decision to be made is how long we run from doctor to doctor. If there really isn’t anything to change the outcome, why am I putting my mom through all this BS? Legitimate questions. Seems to be a way to line the pockets of “health care professionals.” There is a reason why I used quotes here.

Thursday night Liz and Aunt Helen brought a delicious dinner when they came to visit. We had a good time sitting around the table and reminiscing. Reminiscing is good for mom because she does remember the distant past. The present, not so much. It was a lovely evening.

Friday was a good day. We talked, watched movies, and did some housework. Mom ate her yogurt breakfast and helped herself to a bowl of ice cream about 30 minutes before lunch time. I delayed her lunch for a couple of hours and asked her if she was hungry. She said no but she picked up a sleeve of tea cookies and started to eat them. I took them from her and told her she had to have real food as she is suffering from malnutrition from eating too little and eating junk all the time.

Mom got extremely angry…. if looks could kill and she pouted like a 4 year old. I fixed her plate and Charles said, “Aunt Joyce, that lunch is so good.” She ate the small lunch and thanked me. I do wish that feeding her was not so difficult. The doctor says I’m doing it right by offering food several times a day and by letting her have ice cream and such when I can’t get her to eat anything else. It is hard knowing how much weight she is losing and that she is in fact malnourished. There is only so much a person can do.

Mom’s best friend, Zona Mae, came for a visit on Friday night. She stayed until 11 PM and entertained us with stories about farm life. She was a hoot and we had fun staying up past mom’s bedtime. We’ll see how late mom sleeps in today. The last thing mom asked me at bedtime last night was do we have to go anywhere tomorrow? I told her no and she seemed so relieved. Hopefully today will be a quiet day of rest. We have lots to do next week, including doctor appointments and going back to my home in Myrtle Beach.

More later.

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Hush, I’m Reading the Paper – Alzheimer’s in the Family

The last several days have been amazing. Mom has been feeling better and more alert. Her memory is shot but for the first time in weeks she seems more cognizant of her surroundings.

Mom went to church Sunday for the first time since early July. Everyone was so glad to see her and she did well. Yesterday she went out to lunch with me and went with me to pick up her meds. We haven’t done that in some time. We had fun although she forbade me from saying Alzheimer’s. She now says it’s a dirty word and that IS NOT what is wrong with her. We had a lot of laughs about “her predicament” and she said, “We might as well laugh about it!” I’m so glad that she still has her sense of humor. Her doctors have even commented on that.

She has helped me fold laundry and put clothes away. This is a big change from not being able to get her out of her pajamas and sleeping for the better part of the day. I haven’t been able to get her out of the house except for doctor appointments in a long time.

Yesterday I was doing things around the house. I wasn’t making noise or talking. I must be getting on mom’s nerves because she angrily said,”Stop talking, I’m reading the newspaper.” I continued to be quiet, although mom had read that paper 12 times that day. Couldn’t remember that she read it so she read it again and again, sometimes aloud, to share the article with me. I feel so newsy!

We have a neurologist appointment this Thursday so it will be interesting to find out what they say. Mom still isn’t eating much. Other professionals tell me that this uptick in activity is normal and that she will crash and it will be worse than before. I’ll take these days and I’m grateful for them.

This journey is long, sad, and hard. That said, there are several moments in each day that will be thought of sweetly in the coming months. I’m so fortunate to be with my mom for her transition. What an honor.

More later.

Moneybags – Alzheimer’s in the Family

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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

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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

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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

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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.

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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

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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

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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.