Mom continues to do great in memory care. She is more and more alert even though her memory continues to decline. We visit often and each time she is smiling and happy. The staff tells us how well she’s doing and says Miss Joyce is so sweet.

Mom is happy with her hairstylist at the facility. She has a standing appointment at 9 AM on Thursdays. She doesn’t remember but staff makes sure she gets there at the right time. Mom enjoys the food and is eating well.

I ask mom about her activities and she says she doesn’t do any. She just doesn’t remember. She enjoys group exercise every morning and she is dancing again. It’s a beautiful thing to witness. She is playing bingo a couple of days a week and coloring and other activities. They take her to devotions in the assisted living part each morning. She has many new friends. Management knew that she use to play the piano so yesterday they brought a piano to her unit and they are encouraging her to play. She absolutely couldn’t be in a better place.

Mom is having many visitors, which we appreciate. We do ask that you sign and date the faith book in her room so she can remember that you went. It’s important for her as she can’t remember on her own. When she mentions that so and so hasn’t visited it’s easy to show her in the book and helps her remember. So, please sign and date when you go.

My daughter and granddaughters and I visited mom on Wednesday, 1/29. The girls were very active and mom thoroughly enjoyed the visit. Mom played simple games with them and there was a lot of fun and laughter.

Her minister and friends brought mom a recliner and a tv for her room. We appreciate it and mom enjoys the recliner but doesn’t remember how to use the remote control. It’s a good thing as we don’t want a tv to keep her isolated in her room. Staff, doctors and family are encouraging her to be out and socializing as it helps keep her alert. Someone dropped off some lovely throws, one of which was monogrammed. We would really like to know who did this kind act. Mom can’t tell us as she does not remember. So if you did this, please let me know. Thanks.

Mom told me that Bobby H. brought her the recliner and TV. Mr. Bobby has been deceased many years. I talked to her about it and she insisted that Bobby brought them. I asked if it could have been Larry, his son. She looked puzzled for a minute and then remembered and said it was Larry. Alzheimer’s disease robs one of so much.

One of the ladies in the unit use to be a major shag dancer. Staff asked me if I would mind if this person taught mom to shag. Now, another resident is teaching mom so that she has a dance partner. So cool. Mom has been clogging and teaching others. You haven’t lived until you see several people with walkers smiling and dancing to music. Who knew she would ever be able to do this again. It makes my heart happy.

My son and his family visited mom over the weekend. Mom engaged and played I Spy with the boys and find the letter. They colored together. I have to remind everyone that mom has been so withdrawn over the past few years. Not interacting. She didn’t want to do anything or leave her house. Over the last 8 months she would go days without speaking. There has been a miraculous change in her since entering memory care. What a blessing.

Yesterday I visited mom. Glenda, Eugene, Ron and Kai also visited. Ron and Kai are here from Norway for a two week visit. Mom remembered everyone and we visited in the living room area and made a day of it. It was a fun and exhausting day. Mom thoroughly enjoyed reminiscing with them. Happy day.

And now to address some issues. If anyone wants to do anything for mom I would appreciate a phone call or text. While it’s nice that people love mom enough to do things for her, it needs to be coordinated. Please don’t just assume that it’s ok to do xyz as mom does have a care plan that was approved by staff, doctors and family to best fit mom’s needs. Staff cannot discuss that with anyone except immediate family. While there are rules that are facility approved, Mom’s care plan may exclude some of those things. Ask me. I can tell you.

I have also been asked by some to put them on the list to take mom out of the facility. The answer is no. Please stop asking. Only her immediate family are allowed and I don’t anticipate this changing. There are too many issues to deal with in taking her out and the risks are too great to her safety and well being.

Some are insisting that mom doesn’t need to be in memory care and that I’m not doing all I can to keep her home. Please stop tearing me and my family down to her community. It’s understandable to be in denial about her condition, especially if one only spends an hour with her every three or four weeks. This journey is hard enough without the negativity. If you can’t be supportive, just stay quiet.

Again, thanks to everyone for their well wishes. It’s much appreciated. I am going to concentrate on the positive and dismiss the negative. In this life, most of us are doing the very best that we can. That’s a fact.

I will be spending 4 hours at the hospital on Thursday as they try to determine what is going on with my heart. Two doctors think it may have been caused by the stress that I’ve been living with and may be reversible. We will know more after these test. I will say that with 3 weeks of sleeping through the night I have been feeling some better.

As always, more later.

Mom had a recheck with her PCP and Cardiologist within a week of being released from the hospital. We reviewed new medications and mom was completely checked out including EKGs and bloodwork. Her cardiologist agrees that she did not have a heart attack but the higher Troponin levels were due to her acute kidney failure at admission. Mom seems to be doing better physically but she continues to be extremely confused.

The cardiologist took a long time with us and actually commented on the good care that I was giving mom. It was good to hear as the last several weeks had been so hard. Validation, I’ll take it when I can get it. So far all of our doctors have been extremely supportive of our care plans and I do appreciate that.

Mom has been eating more due to medications to stimulate her appetite. She has leveled off at 152 pounds and we hope to maintain this weight. I’m still having difficulty in getting her to drink enough and have been adding liquids to foods and freezing Pedialyte and probiotic juices to keep her hydrated. We don’t want to take another trip to the hospital due to dehydration.

Mom has been feeling so much better after getting hydrated at the hospital. Now that she is eating more she is not as physically depressed. She says she is getting well. She still retreats into her word find books, her safe place, and it’s hard to get her to talk or interact with me. She has also been a lot easier to deal with and she doesn’t seem to be as angry with me. I’m thankful for that gift.

She also thinks she is superwoman as she is feeling better. Yesterday she quickly hopped up to Rollate to the kitchen and came very close to a spectacular fall. I couldn’t get to her but she recovered and didn’t splat. We had a discussion about her continued issue with being a fall risk. She is stronger but she is wobbly because of many factors, including her spatial vision being off due to the disease. She promised to be more careful and she will until she forgets.

We came back to the beach on 12/8 and it has been so pleasant here. Mom seems content and I’ve engaged her in ordering Christmas gifts for the grands. She was very animated and happy. She actually put a couple of ornaments on the tree before she sat in her chair to supervise. She has been smiling more too. We have been creating beautiful memories with my mom. I’m grateful for this. Precious time.

On Tuesday 12/10 I got my 1st full day break in over 6 months. Ilona kept mom and Ray took me to Charleston to see the Mary Whyte, We the People art exhibit. We toured the battery later. It was beautiful and all the old homes were decorated for Christmas. We ate at Fleet Landing, over the water. It was a wonderful day and I came home recharged.

It was a good thing I was recharged because early last Wednesday morning there was a bumping around the back bedroom windows. I turned on the lights to check it out and the sounds stopped. I kept my phone in my hand and went back to bed. About 30 minutes later someone was trying to come through my side door. The storm door was open and it sounded like someone was trying to shoulder through the steel door.

I calmly called 911. The dispatcher kept me on the line until the police came. They arrived in 2 minutes. We ended up with 3 police cars and 5 policemen. They secured my home and filed a report. I have never had this type of problem at the cottage so I was a little unnerved. My storm door was broken but that is the extent of the damage. It concerns me that we were home when this occurred. Mom, bless her, slept through the whole ordeal. That is considered a blessing.

Wednesday was not a good day. Several things happened that exponentially increased my stress level. I’m just mentioning it to say that life continues and even though you think you can’t take anymore, somehow you can and you push through.

I’ve have been dealing with a few days of second guessing, over thinking and depression. I understand that it goes along with having Alzheimer’s in the Family. When I brought mom home from the hospital she demanded that I take her to her home and leave her. She was ugly about it. She absolutely can’t be left alone for any period of time. I finally told her that her disease didn’t just affect her, that it affects the whole family. I told her that we were stepping up to care for her and do what’s best for her. I told her the truth about sacrifices being made. I’m glad we went there because she has changed her attitude and has become happier and more cooperative. I hope it lasts.

We are on a plateau right now and we take it one day at a time. She will crash again as that is how this disease works. I talked with the memory care facility and they believe they will have space for her in January. They’ve asked for a list of her favorite music as part of the therapy is music therapy. We hope that they can get her back to playing the piano and singing. They are going to work with her to see if they can interest her in painting again. She has quit all these things and shows no interest.

This is a long journey. We take each day as it presents itself. I am thankful for family and friends who are traveling this road with us. A special thanks to Martha for sending mom the Gladly the Cross Eyed Angel. She loves it.

More later.

Mom has been doing better since her hospital stay. We’ve had follow ups with her cardiologist and PCP. They say she is doing okay and that I’m doing a good job caring for her.

Her hospital records indicated that mom was in acute kidney failure when admitted. The records listed Alzheimer’s and A-Fib as 2 and 3 in order of illness. There were 12 other issues that were also being treated.

We have 3 new medications. One is given only when her heart rate exceeds 100. Metoprolol is given as needed. She gets Megace twice a day to stimulate appetite and Remeron at bedtime which helps her sleep but also increases her appetite. Win win.

Since starting the Remeron mom has slept through the night. Hallelujah! She is more rested and she is eating more. The goal is to stabilize her weight where it is. I am hopeful. We still have difficulty getting her to drink enough. If she dehydrates again it’s another trip to the hospital. All the doctors have told us that if she wasn’t overweight at the start of this that we would already have lost her. It’s good to have some reserves. Mom has gone from 220 to 154 since last January.

Mom continues to be extremely confused. She has lost the last 7 months of her life. She tells doctors that she lives alone and takes care of all her business. She told them she was visiting me for Christmas and got sick. None of this is true. While she is feeling better after her hospital stay, she is very tired.

We are taking one day at a time. It is all we can do. My goal is to keep mom safe and hydrated. This is a huge task. I also hope to get her placed in memory care before we have major issues at home. Every day is a challenge. I am suffering from burnout and it’s affecting my health. I do get breaks here and there but not enough to recharge.

I hope to bring in home health for 3 days a week for 4 or 5 hours each day. I’m screening people now. It’s a process to find the right person. Hopefully mom will accept their help. I have business issues that have been languishing and also need to get Tom’s estate finalized. It’s been over three years since he past. Most days I feel stressed at all of the responsibilities. Sometimes I just have to let things slide. There is only one of me.

Before I close I’d like to touch on the feelings of guilt. I try hard not to feel guilty about choices. Hell, I’ve been in therapy to learn how to not feel guilty. That said, mom always said she wants to stay at home. Not possible. She says that I might as well put her in prison when I just keep her safe. Examples: she can’t take her Rollator up and down steps. She can’t walk without assistance and she tries. She also can’t handle knives or other sharp objects. I am conflicted but do not feel guilty for the choices I have to make.

Making the choice for memory care was hard. Mom will resist but she will get stimulation and be in a program that will help with her situation. The one I’ve chosen also does music therapy as it’s very productive for Alzheimer’s patients. They’ve already asked for a list of what she likes to listen to.

Some have said that I can do all this at home. It doesn’t work that way. Mom will not listen to me. Many days she won’t communicate with me. She tries to please others and authority figures. Her life will be richer than what I can provide. I can go back to being her daughter instead of a 24/7 caregiver. We both can live a more meaningful life.

I guess what I’m trying to convey is this: many love my mother. Many spend about 15 minutes with her about once a month. Some of these people keep telling me I need to keep her in Newton Grove or how hurt she would be if I do xyz. While I appreciate that you love my mom, just stop it. It isn’t your life or your decisions to make. It really doesn’t impact you in any way and I don’t succumb to guilt.

Rest assured that I’m doing the very best for my mom. I am driven simply to make decisions based on her safety and enrichment. I love her dearly and seek only the best for her. Sometimes that doesn’t include keeping her at home.

More later.

Thanksgiving was a beautiful day here. Lots of southern farm table traditional foods with my personal twist. Good company with Ilona, James and Richard stopping by for a plate. It was a feast and mom actually said the blessing and participated in the ” what am I thankful for” discussion. She didn’t eat much and retreated to her chair while the rest of us visited. It was the best day.

Friday morning I went to wake mom around 9:45 AM. She was lying on top of the covers in a fetal position and she was moaning. Her voice was a whisper when I tried to check her out. I couldn’t sit her up nor get her up. Her vital signs would not register and I tried 3 times. I immediately called 911.

Rescue arrived in 7 minutes and in the meantime dispatch told me what to do until they got here. Travis and Kyle, with HCFR, were wonderful and got her transported to Grand Strand Hospital ER. I was afraid that she was dying.

When I went back to the ER mom had several professionals working on her. Many tests were run while they provided supportive care. Early on they thought mom had a mild heart attack. Her heart enzyme Troponin was elevated which indicated a heart attack. She had cardiac and several other consults. By Saturday they decided it wasn’t a heart attack but her organs had begun to shut down which caused the Troponin to leak into the blood stream.

We had struggled to get mom to eat and drink for several weeks. All her doctors were aware. Her collapse was due to dehydration and malnutrition. When she was admitted to the hospital her kidneys were badly affected. The supportive therapy, this time, is reversing the adverse affects.

Amos and Jeremi, my kids, drove down Friday to provide support. It was comforting to have them here. We had some good discussions, which were really needed. I appreciate them so much.

Saturday mom was more alert, probably because Amos and Jeremi were here (and she’d had a few bags of fluids, etc.) She introduced me to her doctor as her mom. She couldn’t get the right word and that doctor had been in several times before. At a later time she introduced her grandchildren as her niece and nephew. I believe she knew who they were but she couldn’t get the right word.

By Sunday mom was feeling better and alert. She had cardiac, physical therapy, speech, nutrition and other consults. Many were involved in her care. Each and every one of them were phenomenal.

Mom’s best friend of 69 years, her minister and his wife drove 3 hours to see her on Sunday afternoon. They brought a beautiful flower arrangement from our friend, Mary. Mom had a good visit and was animated. She was extremely exhausted when they left.

On Monday two doctors took me outside of the room to speak with me. One doctor advised me on getting home health aids until we can get her placed. He told me to spend every bit of her money on help.

He also told me my life was going to get exponentially harder. He said hers wouldn’t because she wouldn’t remember. He was a kind soul and at the end he gave me his card and told me to call him anytime day or night with concerns. Wow. I cried.

The other doctor also expressed similar concerns and paged and expedited different orders when mom was becoming agitated. The professionals at Grand Strand are a step above the rest. They got mom to eat and drink and they handled her beautifully.

Mom got a total of 8 bags of fluids. She also received a bag of broad spectrum antibiotics as they thought she had an underlying infection due to her skin picking. She was released Monday evening after 6:30PM and we were home by 7 PM.

She has been a little more confused than normal. She couldn’t understand why we brought her all the way from Newton Grove to a Myrtle Beach hospital. There was no way to explain it so that she would understand. It’s ok. It is what it is.

She is also angry with me because I won’t take her back to Newton Grove and let her live alone with people just checking in on her. She will never understand her situation and can’t remember that the doctor has ruled that she can’t live alone nor drive. It’s frustrating. She told one of the doctors that she lives alone and was visiting me when she got sick. “Ain’t that a note!”

Today she asked for her checkbook. She hasn’t been in control of her finances since October 2018. I let her see it and she wanted to write me a check to pay for my “troubles.” I told her again that she can’t write checks and that her money could only be used for her expenses at home and her health care. So here we sit with her angry again.

I would be lying if I told you that this journey isn’t excruciatingly hard. Watching your loved one disappear into an abyss slowly and piece by piece is heart breaking. This horrid disease affects the patient, the family and friends. The kicker is knowing that no matter the sacrifices and actions that are taken, the outcome will be the same.

Thank you to all who are following this end of life journey. I hope it helps in some way.

More later.

I thought long and hard about what to share about this journey. I have omitted some things that may be helpful due to the sensitive nature of the discussion or actions of my mother.

I have decided to blog about my experience as primary (only) caregiver. Most information deals with the patient and what they go through with little thought given to the carer. Even though the whole family is affected by the disease.

25% of dementia patients are kept at home until they pass. 40% of caregivers die before the person they are taking care of. This is from a Stanford Medical recent study. Exhaustion and stress cause a myriad of illnesses in the caregiver. What happens to the dementia patient if their caregiver can no longer care for them? It’s another issue to plan for so your loved one doesn’t become “a ward of the state.” I recommend researching facilities and placing your loved one on the waiting list even if you plan to keep them at home. I wish that I had taken this step.

Often when you realize that you can’t keep them at home, you are already at the end of your abilities and the wait for a place can be months away. There is also a lot of paperwork if you can’t afford the care and there is no road map about how to proceed. Fortunately I have friends who could point me in the right direction.

This past week has been hard to navigate for both me and mom. She has gone days without speaking to me and gets angry when all I’m doing is trying to keep her safe. She told me on Sunday that I was mean and hateful because I reminded her that she couldn’t walk around without her walker. She still wants me to go home and let her live alone. She can’t. It’s also obvious that I cannot keep her safe.

You cannot reason with a dementia person. Mom, at present, has no depth perception and sees no danger. When she falls and has to have a broken bone repaired, she will most likely go into delirium and not come out of it. This means nothing to her. She doesn’t understand that she can’t take her Rollator up and down steps and she gets mad as heck when I stop her. I’m so mean.

Mom’s heart rate has been in the mid forties for a few weeks due to the A-Fib. We saw the cardiologist on Monday about her issues which includes all 4 of her heart valves leaking. I really liked Dr. Cooper as he took his time with us and explained everything and answered my questions respectfully.

He told me that mom is not a surgical candidate and that she can not take any type of blood thinner because of her skin picking. Finally a doctor that gets it. He started her on Amiodarone 200 mg twice a day for 2 weeks then 200 mg once a day unless her pulse drops below 50. This drug should help regulate her heart rate. He stopped the Cardizem permanently and we will wean off the Lopressor over the next 3 weeks. Once acclimated to the new drug he hopes to stop some of her other medications. Something I’ve asked for multiple times.

Amiodarone can cause many issues with heart and lungs, etc. Dr. Cooper explained that with mom being 83 and the issues show up 7-10 years down the road, we shouldn’t have to worry about the contraindications. Since mom can’t take the blood thinners, she is at a very high risk for stroke. The Doctor believes that this medication will improve her quality of life, even with dementia.

After the cardiology appointment Glenda came to stay with mom so that I could go home to take care of things and get a mini break. When I got back to mom’s Glenda said that she asked her multiple times where I was and if I was trying to put her in a “old folks home.” I’ve not spoken to mom about this yet so I know that at some level she knows that it’s time.

After Glenda left mom quit talking to me again, even when I directly address her. I decided to blog and maybe get her in bed early tonight. This living in imposed silence is hard. I had a little panic attack tonight and I haven’t had one in years. Existing like this is miserable. Mom has no quality of life and I’m not really living. Hopefully, a bed will open soon and I can get more therapy and get back to a life that I recognize as my own.

I’m so thankful for my friends and relatives that “get it” and support both mom and me. You all mean the world to me and help me make it through each day. I love you all so much.

More later.

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.

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.

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.

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.

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.

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.