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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

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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.

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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

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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

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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.

Bumpy Ride – Alzheimer’s in the Family

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Last Sunday we woke up to mom bleeding again. She had been on a lower dose of xrelto for just two days. The bedding was covered in blood. I got the bleeding to stop with compression. It was a mess and the end of xrelto for her.

Mom wanted to go to church so we got ready and arrived at church (with a first aid kit) at 10:45 AM. The parking lot was empty and the church was locked. Mom didn’t remember and I didn’t know that church on 5th Sunday starts at 9:30 AM. Oh well, we tried.

We (I) decided to ride around the countryside to see what has changed since I moved away 47 years ago. It was a pleasant experience and mom even remembered some of the home places and she was quite amused at some of the large bean fields which had multiple scarecrows.

We ate at her favorite restaurant (Smithfield’s BBQ) again. She didn’t remember what they served and she had trouble deciding even with my help. She just struggled. She got to see and speak with some of her friends while we were there. I consider that a win for her.

When we got home, her friend Charlotte stopped by and we had a great visit. When she left Shirley stopped by. Mom didn’t know who she was at first but she remembered with a little prompting. When the visitors left mom went to sleep in her chair. Her arm had bled off and on all day. It finally stopped around 4 PM.

I called her GP early Monday morning and left a message. They called back before 9 AM and told me she couldn’t take xrelto and to stop it and keep her on the 325 milligrams of aspirin. I had already done that. I also made an appointment for that afternoon to get the FL2 form that I needed for admission to assisted living.

Glenda came to visit mom so that I could go to the doctor appointment, it went well. We discussed the xrelto issues and items pertaining to the FL2 form. I expressed concerns about the difficulties surrounding getting guidance and help as we have hit one roadblock after another. If it wasn’t for friends who have been through this, I would be lost. It shouldn’t be this way but our health care system in this country sucks, especially for the elderly and poor.

The first thing that the doctor said to me was, “We were wondering why you hadn’t asked for this form before now. We know how hard caregiving is and don’t want you to lose your health or die before Ms. Joyce.” Surprised me. Now I’ve heard it from three doctors “take care of yourself.” I’m trying . The doctor also said that mom’s valvular incompetence was the worst they have seen and they didn’t know what the cardiologist would recommend. They are helping us get her cardiology appointment moved up. No luck yet.

I picked up the FL2 form on Tuesday and went directly to meet with mom’s case worker. The doctor listed mom’s issues in this order: Alzheimer’s Disease, atrial fibrillation, coronary artery disease, hypertension, Hyperlipidemia, depression, anemia, and edema of the extremities. Gee whiz.

Mom’s case worker was a huge help. I signed multiple forms and made an application for assistance for mom. The case worker told me of the next steps which includes an application with social security. She also called the assisted living facility to tell them that mom had a pending application, the facility will admit her with the pending application.

I called social security and their first available appointment is November 1st, I took it. The agent told me that they don’t recognize a power of attorney and that mom should go with me. I explained the situation so the agent said they didn’t want it to be a hardship for her so I have to bring any paperwork that shows my name in relation to doing business for her. It seems complicated and I may have to take her in. I don’t understand how they think someone with Alzheimer’s is capable of signing any documents at all. Absolutely stupid. We’ll see how this all pans out.

We planned to come back to the beach on Wednesday. Mom bled all over the bed again, 3 days after stopping the xrelto. Craptastic. While I was washing sheets and packing to leave, Jackie offered to do mom’s hair. Thanks Jackie. Mom looked beautiful. We headed for the beach around noon. It was so good to get home.

Mom has been sleeping a lot since we got here. Here bp is low normal and her pulse is typically 40 to 47, which may make her sleepy. Ilona kept mom for me to see my friend, Ray, and get some down time. Ilona is such a huge help to me and I’m so glad to have her in my life. She is a very special person. She has given me three more days that she can keep mom so that I have much needed breaks. I appreciate her.

Friday mom wouldn’t brush her hair nor allow me. She slept about 70% of the day but she ate a little more than usual. She got a serving bowl sized ice cream for herself and laughed with me when I asked her about it. She said it was just the right size for lunch. She thoroughly enjoyed all of that ice cream and promptly went to sleep.

More later.

Exhausted – Alzheimer’s in the Family

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On Monday I met with good friends Beverley and Joyce at Tin Roof Restaurant for lunch. It was great catching up. I got a 3 hour break from caregiving. Funny thing about getting these few breaks is the fact that in the back of your mind you worry about your loved one being ok. I’ll just call it “a break of sorts.”

I don’t know what I would do without my support system. I appreciate each and every one of you.

Mom and I went back to her house on Tuesday. So much going on this week. This traveling back and forth is very tiresome for both of us. It’s a necessity at this point, however.

Wednesday we went to Sampson Regional Hospital in Clinton for her Electrocardiogram. She asked me every few minutes “where are we going and what is going to happen there?” On this trip she was able to rollator back to the cardiac lab without the use of a wheelchair. Major improvement or just a better day. We know it is the later.

Afterwards we went to her favorite restaurant and she ate pretty well. She was exhausted when we got home.

Her GP’s office called at 9AM on Thursday with the results. Mom’s A-Fib is caused by valvular incompetence. All that means is that all 4 of the valves in her heart are regurgitating. It simply means that when her heart beats and the blood goes out of the chambers, there is a back flow into the chambers. The heart and body isn’t getting sufficient blood. It’s also called leaking valves. All 4 of them. The aortic valve is the worst.

The GP sent the results electronically to the cardiologist in hopes of moving her appointment up from 10/21. So far no luck. Mom is saying that she doesn’t want any surgery and I’m in agreement. Anesthesia may cause Alzheimer’s patients to become delusional and often they do not get better. We’ll wait to see what the cardiologist says but I will have to be convinced about her quality of life. We’ll see.

I spent the remainder of the day making phone calls and researching valvular incompetence. So much information but none on valvular incompetence in all 4 valves and nothing on any patients with dementia. Not even from Mayo Clinic or John Hopkins. Some studies indicated that patients over 80 (without dementia) had a 17.5% mortality rate at 30 days and 20% at 3 years. There was a 1 year recovery period. That said, that was aortic valve replacement only in patients without dementia.

I would like to add that there is an ongoing issue about xrelto. Mom bled profusely on the 20 MG dose and I took her off that and back on the 325 MG aspirin. She is also on Plavix. Her doctor wanted her put back on a lower dose of of xrelto anyway. After much passionate discussion, mom started on the lower dose yesterday. I’m conflicted about it but the doctor insisted. This dose is 15 MG so not much difference. If she bleeds this time, xrelto is done and maybe her current physicians.

Thursday night we went to bed early as I was extremely exhausted. I awoke around 1:30AM because I heard mom’s rollator. I thought maybe she was going to the bathroom but no. I got up and mom was in the living room and had all the lights on. She said that she saw men with flashlights trying to break in to the beauty shop. All the blinds were closed and there was no way that she could have seen that. There was no one outside. Maybe she was dreaming. I calmed her and got her back into bed and she went to sleep straight away. I did not, however, until almost time to get up. Exhaustion.

Friday I had an appointment at an assisted living facility. Thanks to Teresa for helping me navigate that. There isn’t much help out there for families in this situation. The meeting went well and mom is now on a waiting list to get in. It’s a nice place with a 4 star rating and they were able to answer all two pages of my questions satisfactorily. I was impressed by the staff and the facility. I spoke to some of the residents also. It was a positive experience. Now we wait.

Glenda and Eugene came by and brought a great lunch. Mom ate more than she has in a long time. Glenda is a good cook. We enjoyed their visit so much. They have been very supportive in our journey and for that I am thankful.

Today, Saturday, I slept until 9 AM and mom slept until 10. We sorely needed the rest. The journey is exhausting.

More later.

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Crash and Burn – Alzheimer’s in the Family

It has been great being at my home. I took care of business, Tom’s estate, and seeing my dear friends who are helping me during this journey.

Mom started Zarelto on Wednesday. I questioned the doctor about this as mom constantly picks her skin. He said she had to take it to avoid a blood clot due to A-Fib. I’ve been reading The Art of Dying Well and I agree with the author. Why go to these lengths and a pacemaker if it will keep her heart beating regularly even after her mind dies? Seems counter to natural death to me.

At any rate, we’ve still been having good days (relatively speaking) and mom has been doing her word finds. She doesn’t communicate much, just retreats into her books. She is still reading the newspaper and magazines over and over as she doesn’t remember that she read them already. One thing I’ve learned is that she really doesn’t like Trump very much. We no longer watch any news of any kind. It’s too upsetting for her.

On Wednesday I signed paperwork for Tom’s estate. November 3 will be three years since I lost him. We are very close to the end of the estate business. I need it to be over so that I can move forward. After that Christine at Massage Envy gave me one of the best massages I’ve ever had. Much needed.

On Thursday I did chores and made special meals for mom. She is eating a little better but she is still losing weight. Almost 40 pounds since June 12th.

Ilona stayed with mom so that I could have some time away. She is so good with mom. I spent the evening with my dear friend, Ray. He has been so supportive of me in this journey, which I appreciate very much.

Friday was a busy day and I took mom to Sun City Cafe for dinner. Tracey Rae welcomed us with a big hug. Tracey Ray is one of my dearest friends at the beach. We had to take a rain check on our annual dual birthday celebrations. Hopefully that will happen on our next trip to the beach. I’ve missed her. Mom ate about a fourth of her chicken taco and she really enjoys going to Sun City.

Today started out with stripping mom’s bed. She bled all over the sheets, comforter and mattress cover. This was due to starting Zarelto on Wednesday. I questioned the doctor about putting her on this drug and they insisted it was to prevent her from having a stroke due to A-Fib. Well, she bled all over both sofas today and I had to work to get the bleeding stopped. The message at the doctor’s office said go to the ER. I made the executive decision to stop the Zarelto tonight.

I’ve been reading The Art of Dying Well which was recommended by my Alzheimer’s support group. Why give meds or opt for a pacemaker (as her doctor thinks is necessary) if the heart will beat regularly even after the brain dies. It makes no sense to me. There are things worse than a natural death. These are all decisions that have to be made.

Mom is on 10 medications. I ask over and over if we can take her off any of them. Her doctors say no. Next step is a pharmacologist to evaluate and remove and approve meds. At this stage of this game, why is she on any meds with their side affects. It doesn’t make “a tinkers damn” as mom would say. How is prolonging a terrible life better than choosing a natural death. I don’t think it is. Why torture someone trying to exit this existence. The body is trying to shut down but modern medicine try’s to save everyone, even those who will suffer terribly from prolonging their lives.

These are things that I ponder. I’m changing my paperwork for myself to avoid this for my children. No child should be put in this position when there are steps to take to avoid it.

I am also trying to get mom in an assisted living arrangement. I’m exhausted every day and can’t keep up this 24/7 schedule much longer. It’s affecting my health. With assisted living the major caregiving is done by others, giving me the opportunity to be her daughter, love her and not be stressed out all the time.

People shouldn’t judge any of my decisions. I love my mom and want the best for her, including keeping her safe. I also have to take into consideration my own health and well being. The stress of this situation is dangerous to my health. My own doctor has expressed his concerns about a 67 year old caregiver. Things to work through.

More later.

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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.