Self Isolation – Alzheimer’s in the Family

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As this pandemic continues we can only visit mom through phone calls. Our last call was the best yet. Mom was the most lucid that she has been in weeks. She seems to understand that we can’t visit and tells me not to worry about her because “they take good care of me and I’m safe and happy.” You can’t ask for more than that.

In SC our governor opened up the state to tourism this week. There are many people here from COVID 19 hot spots. I continue to isolate and only venture out for doctor appointments and pharmacy. I order groceries online and pick up without going into the store. My doctor had me wearing a face mask and not going into crowds before it became dictated by the government. I’m thankful for a good and informed physician.

I’m amazed at the number of people who don’t take this virus seriously. The beaches are crowded and few are wearing masks or other protective equipment when out and in close proximity to others. There is a six foot rule here but in most places it’s a joke.

Last week we received a text that the seafood market in Surfside had crawfish and stripped bass. We got our masks etc and headed over. The market only allows 3 in at a time and the employees wore PPE and operate pretty safely. We were the only customers who had on a mask. A man 6 feet ahead of us was about 75 years old and maskless. When he saw me in my mask he went into a diatribe about the virus being a hoax and the liberals doing anything to discredit Trump. He continued railing about it and I just ignored him.

Bless his heart. He was the third that was allowed in the market with us. He finished shopping and paid and then came over to glare at us, in our space. I turned my back to him and he continued to glare and smirk. I guess that he decided to leave because we wouldn’t engage him. What a bullying, frightened little man he was.

We bought our seafood and left. The crawfish boil was delicious as was the air fried stripped bass. Sweet justice for putting up with one of God’s troubled children.

With the governor removing some restrictions my doctor is now able to perform my needed surgeries. I’m scheduled for next Wednesday for a cardiac cath and to have an ICD implanted. An ICD is a hybrid pacemaker/defibrillator device.

I’m relieved to finally be able to get these procedures. Under pandemic rules and to keep hospitals from being overloaded these procedures were deemed as elective. I have a long list of symptoms that would be an emergency room visit. I’ve been on restricted activities since February as my heart is functioning at 30% EF. The meds to strengthen my heart causes hypotension with my BP dropping to 80/40 at times. I have some really bad days. Good thing is that I can’t do housework or anything that causes exertion.

During this time I’ve enjoyed hammock time, reading and writing and FaceTime with family and friends. I miss everyone so much.

I am a little anxious about the procedures but I look forward to a pretty normal life after recovery. Recovery is about a month but it will be the same as I’ve had to live now with the limited activities. I’m looking forward to feeling better and living a more normal life.

I am happy that a room in memory care opened up for my mom two days after I was diagnosed with the heart condition. Doctors had told me to place her due to concerns over my health. I am physically unable to care for her and am so glad that she is in such a good place.

Unfortunately several people who hardly spent time with mom have told me that she doesn’t need to be there and that if I loved her I would keep her at home, no matter what. I try to think these folks mean well and just don’t understand. I encourage people to be supportive of folks even if you don’t agree with decisions being made. unless you have lived it and know all the details you shouldn’t make judgments. Life is hard enough as it is without the unneeded and unappreciated comments both to me, my family and my mothers community. For the record, I’m tired of being maligned for making the best decisions for all of us. Be kind.

As always, more later.

Thanksgiving With -Alzheimer’s in the Family

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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

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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.

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.

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.