Tis the Season -Alzheimer’s in the Family

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.

Holidays and Hospitals – Alzheimer’s in the Family

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.

Thanksgiving With -Alzheimer’s in the Family

What a week. My cousin, Richard, drove in to see mom. A 10 hour drive from Memphis. Richard is Aunt Gayle’s son. Aunt Gayle is mom’s younger sister who passed with complications of Alzheimer’s Disease the first of June.

From speaking with her immediate family I have discovered that their journeys with this disease are very similar.

Mom remembered Richard even though she was having a very bad day. She still isn’t really eating and she is very weak and wobbly on her feet. I think we are nearing a time to move up to a wheelchair. She is in constant risk of falling.

Mom did enjoy Richard’s visit and he was so good with her. We’re glad that he came.

Mom is still having a bad day today. Still not eating and a new twist, she hallucinated today. She saw butterflies coming out of the wall in her bedroom. She said she wasn’t afraid but it scared me. None of the meds that she is on cause hallucinations.

I called her primary care physician (PCP) and they returned the call promptly. They said it is most likely her advanced Alzheimer’s but that for piece of mind I could take her to the ER. She said they might check for an infection such as a UTI but most likely, with her history, they probably would not do anything. My support group indicated the same. I did get tips on how to handle hallucinations if we have them in the future.

We are still going to try to have the Thanksgiving celebration here tomorrow afternoon. I don’t know if we will make it to the family celebration on Saturday. We will see how she is doing before we make the trip.

I have been emotional today, realizing that this is most likely our last Thanksgiving with my mom. The way she is declining I don’t know if she will be here for Christmas. It’s heart breaking. We just do the best we can.

I don’t think we will have many more mobile days as mom really is having trouble walking with the Rollator. A wheelchair is next and there is a high likelihood that she will be bed bound in the not to distant future. I am hoping that a bed opens in memory care soon. She is almost at the point that I can’t keep her at home. I’m tired and I can’t keep her safe.

While all this is going on I do want to give thanks. Thankful to have this time with my mom. Thankful for my family and friends. Thankful for the life the universe has given me. Have a blessed Thanksgiving.

Withering Away – Alzheimer’s in the Family

We are back at Myrtle Beach as of Saturday afternoon. It has been a hectic few days. Mom is on the waiting list at Day Spring and there are only three ahead of her. That is good news.

We are waiting on the confirmation letter from social security before we can open an application for aid. This will be the second attempt and it takes weeks because of the bureaucracy. In the meantime if a room opens up it will be self pay until the applications is filed. We are hopeful.

Mom has lost 5.1 pounds in 8 days. Today she ate 1/2 serving of yogurt and 2 bites of a sandwich . She asked me to please not feed her anymore today. She just can’t eat. It’s sad to watch and be totally helpless to help her. This disease is devastating.

I got to take breaks on Saturday and Sunday nights thanks to Ilona taking care of mom so I could get a much needed rest. Thanks to Ray for the company and the movies. I appreciate both Ray and Ilona so much. My friends and family make this journey more tolerable.

I’ve been cooking for Thanksgiving today. We are having what I call an orphan holiday late lunch at my house, for people who can’t home or don’t have a home to go to. Mom has been instructing me about the food, but bless her, she can’t remember and can’t help. We laugh and carry on. We will be spending the weekend celebrating Thanksgiving with family.

I really don’t know why but today has been a weepy day for me. I’ve cried at the drop of a hat. Maybe I just need a cleansing cry. These days have happened every few weeks in this journey so I just go with it and then it passes.

So now for thoughts about action plans for both young and old. Trust me, if you do these things your family will have an easier time if one becomes incapacitated for any reason.

– make a living will and have it notarized and/or registered with the clerk of court

-create a durable power of attorney, if you have this in place your wishes can be legally followed

a. name someone you can trust and alternates as POA

b.covers medical, real estate, investments and other issues

c.use an attorney and have it filed with the clerk of court

d.it isn’t expensive

e.your family will be grateful

-create a list of assets: life insurance, financial accounts, real estate, jewelry, cars, anything of a positive value/include account numbers if applicable

-create a list of liabilities/bills/people you owe. Include account numbers and phone numbers

-get long term care insurance (if you are younger the premium is very low, if older it can be expensive) it will protect your assets if you become incapacitated

-avoid the mindset that it won’t happen to you or that you have “lot’s of time”

-if you notice a family member in decline don’t wait too long to intervene

I will be adding more to this list soon. It is really important to address these things to avoid delays and hardships in getting things that you need. While it will not remove stress it will reduce stress and frustrations to your loved ones when they are trying to help you.

My journey with mom has been stressful and frustrating because many of these things were not done. Also, in hindsight, she was making bad decisions for the last 10 years. It tells me that she was astute at hiding her fading memory. Unfortunately, doctors don’t make a diagnosis until they can no longer handle finances or get lost while driving. In my opinion, by this time your loved one has been in danger for way too long. This needs to change.

There will be more later. Have a wonderful Thanksgiving. We intend to here.

Patience, not necessarily a virtue- Alzheimer’s in the Family

We came back to mom’s house in Newton Grove on Sunday, November 17th. Mom was happy to be home. I paid bills and caught up things at her house. She sat in her chair and read the newspaper over and over with no communication.

Monday my daughter and grands came to see us. Ansley skipped school to come and it was a special day. Ansley is six and Hayden will be 2 next week. Hayden has been jibbering a lot but on this visit we could understand a lot more of what she said. When she got here she ran to mom calling Granny, Granny and she hugged her. Melted my heart. She also called me Grandi for the first time (that I could understand). So special.

On Tuesday the 19th we had an appointment with her neurologist in Raleigh. I knew it would be a difficult day when she came out in her pajamas. It’s always a sign of a challenging day when she’s not dressed when she leaves her room. I told her she needed to bathe and dress soon as we were going to her neurologist. She said she wasn’t going.

Zona, her best friend, came by for a while and I had to tell her we needed to get ready for an appointment in Raleigh. When she left we had to rush to get mom ready. It was too much. Mom needs to take her time because between the not eating and the A-Fib she simply needs a lot of time or it’s a disaster.

We did make it to the appointment and mom had lost over 18 pounds in 8 weeks. She had difficulty answering questions too. The doctor said she was in an extremely rapid decline. The doctor also talked with me about the high possibility that I will develop Alzheimer’s and that I should plan accordingly.

The visit was thorough and the doctor gave me the option of starting mom on Razadyne 2 mg once a day. The normal dose is 2 mg twice a day but due to mom’s sensitivity we are trying a very low dose. It doesn’t reverse damage but it can slow the progression of the disease. I told her we would try it. That was Tuesday and the doctor called it in to our pharmacy. As of close of business today, Thursday, Medicare has declined to cover it and the doctor and the pharmacy are appealing and trying to get it covered. Maybe it’s a sign that I need to say no.

I must share that on the way to Raleigh for the appointment mom was talking about many wrongs from her past and asking me if she is dying. I always tell her “not today, mom.”

Glenda, our cousin, came to help with mom on Wednesday. Glenda is one of those special people and she means so much to us. Eugene too! I left at 9:15 am to start all the memory care facility appointments that I had that day. It was a productive day and mom is on the waiting list at a 3 star facility in Harnett County.

One facility I visited that was recommended was a dump. Warehousing the elderly and dementia patients. They told me they had no deficiencies. NC has a website from the agency that licenses these facilities and the post deficiencies (problems) and fines and how the facility is rated. The highest rating is a 4. This facility had a 1 rating and several fines. So much for truthfulness. If you are looking for an adult home in N.C. just check here for information: https://info.ncdhhs.gov/dhsr/data/ahlist.pdf

The last facility that I visited was beautiful and everyone seemed happy and well cared for. Staff answered all my questions and I was impressed and thought this is the one. I was told they had no deficiencies and they also had an open bed in memory care. I looked them up and they had a 2 rating and have had many violations since 2009, with the latest one in August 2019. All in the memory care unit. One incident ended in a death in 2017. This place is also a no.

I wonder if many folks don’t know about how to check out a facility. The place I just mentioned had massive fines and was forced to close for about a year. After reopening they are still unable to provide good care. The death was after they regrouped. They are still licensed in N.C. I don’t know how considering the extreme violations they have committed. Buyer beware.

That was the last appointment. I got home around 4:30 pm. I was physically and emotionally exhausted. I had many tears during the day. It is what it is. I thanked Glenda for all she does. I appreciate her so much. One of life’s blessings.

Shortly after Glenda left I got a call from Rolling Ridge Assisted Living. They had a bed for mom on December 1. It broke my heart to tell them that we had just found out that mom no longer qualifies for their facility. Rolling Ridge is a 4 star facility with no deficiencies for the past several years. The best of the best and in my mother’s community. Life is full of detours.

Tomorrow I am going to Day Spring in Wallace. They have a memory care unit, a 4 star rating and no deficiencies. They also have a long waiting list. It is a sister community to Rolling Ridge. I know that at the end of the day, mom will be on the waiting list. It’s worth waiting for a good fit and a great facility. I would also advise to beware of any memory unit that has an open bed. There is a shortage of these places and if there are openings, there is probably a reason that you shouldn’t put your loved one there.

Mom has barely eaten this week. Several days with 1/2 serving of yogurt, 2 bites of sweet potato, and nothing more. When she eats she says she is forcing it down for me. Her doctor says that at this point not to worry about what she eats or drinks and give her anything to get nutrition into her. I can’t even get her to eat her favorite ice cream. Ice cream. She is down to 154 pounds from 205 in May.

Her doctor also said that in this case it was good that mom was a little overweight at the onset of this disease. The organs in the body usually don’t shut down until the body gets to 80-90 pounds. That said, her A-Fib was probably caused by her lack of nutrition and rapid weight loss. The A-Fib will probably be her demise before the Alzheimer’s gets her. At times I think that it would be a blessing for her to go out before Alzheimer’s completely decimates her mind. This disease is so cruel. It robs the person and their family and friends of so much.

That’s it for now. There will be more later. Thanks for reading. I hope this blog helps someone.

Bureaucracy! – Alzheimer’s in the Family

After the complete bust on getting needed information on Wednesday, we had a quiet day at home on Thursday. Jackie cut and “twisted up” mom’s hair.

On the way over to the shop mom decided to take the Rollator up the steps instead of using the adjacent ramp. I guided her over to the ramp and she reluctantly used it. It was the second time that she made this choice. She looked beautiful after Jackie finished her magic. She said mom was pretty talkative, which she hasn’t been of late. Thank you Jackie for all that you do. We appreciate you.

Later in the afternoon, mom was visited by young cousins who rode over on their dirt bikes. Mom has known Landon since he was born 12 years ago. He has always called her Granny Joyce. She did not know who he was. In fact, she thought he was Aunt Brenda’s grandson. The boys didn’t stay long after that and I told them that it wasn’t personal, it was mom’s disease. They acted like their feelings were hurt. Too young to understand the ravages of dementia. I was sad for mom and for Landon.

Mom has been sleeping a lot over the last few days. Alzheimer’s experts say it is common in later stages of the disease. The brain needs sleep to heal but healing is impossible with Alzheimer’s. She is sleeping about 10 hours during the day. I offer meals when she is awake. Sometimes she eats and sometimes she doesn’t. She had gone from 205 pounds to 162 since June first. This too is part of the disease. Now, when she does attempt to eat, she pockets the food in her cheeks before she eventually swallows. There will come a time when she will be unable to swallow. Sad to say.

Mom’s BP is very low normal but the cardiologist said not to worry about the BP and to be concerned about her pulse rate. Her pulse is staying from 43 to 52. When it’s below 50 I’ve been instructed to withhold one of the heart meds until the pulse gets to 50 or above. Mom is not a surgical candidate so our only option is controlling the A-fib with meds. Nothing can be done about the 4 leaking heart valves. We do what we can.

Glenda came to stay with mom on Friday so that I could try again to get needed certified paperwork. This included driving to the Pitt County Courthouse (1.5 hours away), Social Security office in Fayetteville (1.5 hours from Greenville), then Clinton to cancel mom’s car insurance (40 minutes from the SS office). It was going to be a long day. Many thanks to Glenda for helping out. She and Eugene have been a Godsend. I appreciate them so much.

I arrived at the Pitt County Courthouse and went through security. The courthouse was extremely busy. I was directed to the office to get mom’s certified divorce papers and yet again was sent to the wrong office. Seems to be a theme in the wading through the bureaucracy. Good thing, the offices that I needed were all in this build, once I got to the right place. I was happy to leave with two certified copies. Happy Day!

I stopped at Office Depot and got copies of all files that I had to drop off at the Social Security office in Fayetteville. While in the office last week the Supervisor who helped us told me that I could drop them off or mail them. Dropping them off was supposed to get the approval process started a little quicker.

Well, that sounds easy enough, doesn’t it? Well, welcome to the bureaucracy. I drove from Greenville to Fayetteville for the folks at the SS office to refuse to take the paperwork. The Supervisor was on vacation and the professionals? in the office refused to take them. I asked to speak to his supervisor and he/she was out also. The security guard and others in the office said,”He never should have told you to drop them off.”

How did it become my problem when I did exactly how I was instructed? I went to the post office next door and handed the envelope to a gentleman who told me it would arrive at the SS office on Tuesday. I did thank the folks in the SS office for wasting my afternoon. They weren’t happy and neither was I. I will be writing complaint letters when mom gets her letter of approval, not before. I don’t want them to have any excuses for delaying or disapproving her application.

After finishing in Fayetteville I was off to mom’s insurance office in Clinton. In N.C. you have to go in and sign paperwork to cancel car insurance. I brought the power of attorney, which they copied, signed on the dotted line and voila the insurance is canceled. I’m finding that there are no shortcuts nor easy ways to handle things. This adds stress to the already stressful life of dealing with Alzheimer’s in the family. It should be easier and I will be addressing all this with the powers that be at a later date. A pissed off caregiver can become a

pissed off, loud mouthed advocate for change.

The chores were done for the day. I got to mom’s around 4pm. Glenda said the day went well and that mom had slept a lot. I sincerely thanked her for her help.

I fell asleep on the sofa around 8:15 PM and woke up at 10. I told mom that it was time for bed and she went without an argument. I slept until 7 am and still woke up tired. Mom got up around 8 am and got dressed for church (it’s Saturday) and she though it was 2001.

We got back to Myrtle Beach around 3pm. Mom does so much better here. She really does but she wants to be at her house, although at times she asks to go home when she is there.

Ilona kept mom for me to get out and I spent the night away. I slept straight through until 9:30 am. I feel the best I have in days. Rested. Mom got up at 10:45 and had some yogurt. She’s been asleep almost all day. Her pulse was 47 this morning so I stopped the metoprolol until it goes up to 50 or above. If it doesn’t go up it’s a call to the cardiologist and perhaps a trip to the ER.

This is our new normal. Full of stressors and small blessings. Each day is different and each day I look for the blessings. I appreciate my family, extended family and dear friends. I couldn’t do this without you. Thank you all.

More to follow!

Here, There, Everywhere – Alzheimer’s in the Family

We returned to my home in Myrtle Beach on Saturday. I was so happy to be home. Mom did not talk at all on the trip back. She did mention how quiet it is at my home. It is.

I did a lot of chores when I got home. I’m still trying to get things in place after the remodel and need a few minor odds and ends finished.

Saturday the lock box came for meds. It’s a godsend as mom was getting creative about accessing meds when she shouldn’t. The box holds 24 bottles and her weekly pill planner. No more accidents with the meds. Thank heavens.

Sunday, Ilona kept mom so that Ray and I could go to my dear friends’ wedding. Tracey Rae and Cary had been together for 10 years and decided to wed. They had a beautiful wedding on the beach followed by cocktails, dinner and dancing. What a wonderful thing to share with all of us. Tracey was a beautiful bride and I cried when Cary saw her and he had to wipe tears. Simply beautiful.

November 3rd was challenging and a day of remembering as it is my dearly departed brother’s birthday and Tom’s 3rd Anniversary of transitioning from this plane. Now I have a beautiful happy memory for this date. Thanks to Tracey Rae and Cary. Life goes on and it’s beautiful with those with whom you share life, love and care.

Monday was a day of chores. Mom was still not “dealing” with me. I ordered mom’s medication refills. Loaned Tom’s Raleigh bicycle to a friend in recovery so he would have transportation and ran errands, a few minutes at a time.

Tuesday the Lazy-boy recliner and rocker recliner were delivered. They were ordered 8 weeks ago. They were perfect and mom can get in and out of them much easier than the loveseat. The rocker recliner is hers. One good thing.

Today, we loaded up and came back to mom’s house. We stopped in Clinton to get a certified copy of her divorce decree. I had talked with Sampson County earlier and went to the office I was told. Wrong office. They sent me to the courthouse annex, again wrong place. They sent me to the Clerk of court’s office. I had to leave my cell in the car and go through security. The clerk of court pulled up mom’s records. Low and behold, the record belongs to Pitt County. I spent hours and got nothing I needed due to bad information.

I now have to go to Pitt County Clerk of Court to get the certified paperwork that mom needs for Social Security paperwork. I have about 25 days to get this information or start the process all over. This journey is difficult enough without all the wild goose chases that we’ve been sent on.

I have decided to hire an Elder Attorney to help us navigate this mess. Yes, it is a mess. It will take some of the stress off me and an Elder Attorney can guide us through and file needed paperwork so that mom gets the help she needs. It will be worth every penny and give me some relief.

This process should not be this difficult, but it is. Glenda will keep mom on Friday so that I can go to Greenville, 1.45 hours away to get certified copies that I need. I’ll drive back to mom’s and then drive 45 minutes to the Social Security office in Fayetteville to hand deliver the required documents. I have to do this because the Social Security requirements are time sensitive or we will have to start all over and assistance will be delayed. Welcome to the world of trying to get help for elderly with no assets. It’s hard and frustrating.

In the mean time, mom is still losing weight and will sometimes eat with prompting. At times she pouches the food in her cheeks and has trouble swallowing. It’s part of the disease. In my efforts to keep her safe, as her filters are gone and she sees no danger, she often is very angry with me. One day she told me she might as well be in prison because I keep her from doing what she wants. In this particular incident she was bypassing a ramp to walk up steps with her walker. It’s so hard. Especially when she gives me the silent treatment. I would much rather she yell and get angry like she does at times. She can go a week without speaking to me for some imaginary wrong that I’ve committed.

Updates coming so, again, more later.

Crap Show – Alzheimer’s in the Family

This has been an interesting week. It was good to be in Myrtle Beach, my home. Mom seemed to enjoy being there, even though she talked about staying in her home alone.

We got back to the beach on the 24th. Ilona’s birthday was on the 25th and we celebrated at PF Chang’s on Sunday the 27th. Ilona, James, Ray, mom and I had a good celebration and mom tried to follow the conversation. Over all it went okay getting her out of the house. Ilona kept mom for a couple of days so that I could get a break and have a semblance of a normal life. I am eternally grateful for her support and for Ray who has helped me so much. Don’t take good friends for granted. They are priceless.

Ray came by for a visit on Monday and mom became very animated around him. She told him that she was going to sell her home in Newton Grove and move in with me. Wow! That was a shocker. The problem with this is that the deed is in my and my children’s name since 2008. It was a little progress in the right direction though.

Mom was still not talking to me for whatever reason. Sometimes that goes on for a long periods of time. Intellectually I know it’s the Alzheimer’s but it is still humanly very hard.

We came back to her house on Thursday because we had an appointment with Social Security for SSI assistance today. Well, that certainly didn’t turn out well. I had to take mom because they don’t accept a durable power of attorney. It makes no sense that they will let someone diagnosed with dementia sign any darn legal document, but they will.

The following is extremely personal but I’m blogging in an effort to help folks through this process. The system will not help you and you must proceed with help of friends who have navigated the system before you and limited information that will be shared by agencies.

SSI requires that you apply for any assistance that you qualify for before they will help you. Mom never applied for social security spousal support from her husband. SSI today asked about her marriages and said we had to apply for spousal assistance. The agent looked that up and said mom didn’t qualify for SSI.

She turned us over to the unit supervisor to apply for spousal assistance. Mom’s social security will increase by a significant amount and it’s retroactive for 6 months. She was eligible for this many years ago and this would have made her life so much easier. I had encouraged her to do this but she just wouldn’t. While all this sounds great, mom will receive about $240 too much to qualify for assisted living funds.

This means that in order for her to go to assisted living we must pay out of pocket for her care, minus her social security. This is extremely expensive. I’m at the end of my abilities and I’m not able to keep her safe. It’s compounded by the fact that she is extremely angry with me most of the time. It’s freaking hard.

Today, when the supervisor at social security and I were talking about options and how to proceed, mom became very agitated and started threatening me. I finally said, “Mom, quit threatening me.” That was around 4:30 and it’s now 11pm and she still isn’t speaking.

The staff at the office knew she was a dementia patient but they looked at me with what I interpreted as pity. The staff was excellent, they just can’t help us.

We are going back to the beach tomorrow as a dear friend is getting married. Tom’s earthly assistant and a marvelous couple. Next week I will meet with her caseworker again. It doesn’t look promising but I’ll try.

Plan B is to see an elder care attorney and possibly sell the family home and use the money to pay for mom’s care. That will upset her but it looks like the only option.

This process is not acceptable. When I navigate through this, I have a calling to be an advocate to help people through a process that is cumbersome and unfriendly. I truly believe it is set up that way to make people walk away. This country’s health system doesn’t care about the poor or elderly. I’m seeing it every day.

And, there will be more later.

Caregiving- Alzheimer’s in the Family

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.

Spiraling – Alzheimer’s in the Family

After several weeks of mom having better days, she has begun the downward spiral. I had been warned that she would crash but it was still a surprise. The spiral started over the last several days. Mom isn’t speaking to me very much and she is lost in her word find books all day until bedtime.

It is a struggle to get her to eat and when she speaks at all it’s low and hard to hear. She is sleeping about 75% of the time and is now walking away from her Rollator so I constantly have to remind her that she can’t do that. It is just a matter of time until she falls again. I’m doing the best that I can. So is she but she isn’t safe.

We had a weigh in on Tuesday and mom had lost 3.6 pounds in 2 weeks, 2 days. I weighed her again on Friday. Even with rollers in her hair she had lost over a pound since Tuesday. Her BP is around 90/62 with pulse ranging 40-52. Between her heart and other issues I don’t know how long this can go on.

She is still on the waiting list for assisted living and we’ve done all applications except for SSI at Social Security. That appointment is November 1. I’ve called all nearby offices and couldn’t get an earlier appointment. One agent told me that the powers that be ration these appointments and for me to call back every afternoon to see if a new block of appointments has been released. Bureaucracy at its finest. Seems they make it harder than it needs to be for already stressed out families. Sad.

Mom at times beaks out in forced and inappropriate laughter. It’s so odd to witness this. Her whole face has an exaggerated expression. It is both heartbreaking and weird. Alzheimer’s is a cruel disease.

Ilona has helped with mom and given me a much needed respite for a couple of days this week. This time away is much needed and rejuvenates my spirit. Even while away my phone is always on in case of a mom emergency. Mom will talk to Ilona more than me.

Mom told Ilona that I was selling her car and she needed it so that she could drive. Ilona told her that her doctor took away her driving privileges. Mom said that never happened and she is angry that I’m selling her car. Truth be told, mom’s driving was taken by her doctor in June (past due) and my son gave her the car when mom’s car was totaled. I’m simply signing it back to him as it doesn’t need to be a temptation for mom to drive. It’s all about safety and the fact that tags, taxes, and insurance are now an unnecessary expense that I don’t need to pay.

Mom also told Ilona that she isn’t happy with the current living arrangements. She still thinks she can live alone. She can’t, ever again. Ilona told her that she should be more appreciative of the sacrifices that are being made for her. I know the disease affects mom’s responses and it’s like reasoning with a 4 year old but it still causes emotional hurt.

So many challenges, so much exhaustion, so many sad days and the rare moments of glimpses of my real mom that makes me smile.

More later.