Caregiving…..Screaming is allowed!

So by now you have come to realize that I am going to say it like it is….at least from my perspective. What I want to write about today is the importance of TAKING CARE OF YOU the caregiver. Statistics show that caregiver burnout is high and often times because we as caregivers don’t know how to take care of ourselves while taking care of a loved one we may end of hospitalized or passing prior to the loved one.

How do we as caregivers take care of us? Well, I can only comment from how I take care of me. On Fridays, after I have fed and changed my mother I take a bubble bath. After I get on my comfy couch and watch some TV. Saturday mornings at 7am, after I have given my mother her thyroid medicine, I go for a walk with Jesus. I usually walk 3 miles. I come home tend to mother’s hygiene needs and feed her breakfast. Then I make my own breakfast and watch CBS Saturday. At noon I listen to Wait Wait Don’t Tell Me on NPR…usually while ironing.

Sundays after church, I bring momma into the den with me, via the Hoya lift, and I soak her feet, comb her hair, and soak her nails. After all that I get back on my comfy couch, while momma is in the comfy recliner next to me, and I watch TV or read the paper.

All these little things aid to my sanity. I also have Tuesday movie days at AMC $6 bucks. Now that I’m retired from the military I have a little more free time. But as you can see I take time to take care of me and do some of the things I like to do.

What are the things you like to do? Figure a way to do them. When I was in Hawaii one of my friends would come and stay the weekend with my mother and I would rent a cabin on the beach. Of course this was probably once every 6 months but once again I did what I needed to keep my sanity. What do you need to do? DO IT and have no guilt!!!!!

Tip for Caregiving:

Once my mother became bed ridden it was EXTREMELY difficult to maneuver her in the bed. So Deborah took a flat full size sheet and folded it in half then in half again and maybe a third time in half. Anyway she then put the folded sheet on the bed width wise. She then placed momma on top ensuring that the sheet was under momma’s shoulders and mid thigh. She calls it a pull sheet. Now when we need to change momma we don’t have to lift her up and roll her over we go to the opposite size we want to roll to and grab the two ends of the pull sheet and pull toward us. Momma is then genially pulled by the sheet, remember is is under her shoulders and mid thigh, and she rolls to the size we need and she’s on her size so we can change her or her chucks pads. It’s so much easier and way better for my back!

Last week I wrote about my friend whose mother passed. What I didn’t mention was that my mother had her monthly visit from her physician. Two week prior I thought there was blood in my mother’s stool. Mobile Physicians sent out a person to collect blood and a stool sample. The results were negative in fact Angela (our nurse practitioner) stated that Momma’s results were “outstanding” for her age and considering she has been immobile for over a year. Her next comment was that my mother was live to be 105 years old!

Now in the spirit of being being fully transparent with you I have to admit her comment brought me joy but also anxiety! I don’t think I’M READY, PREPARED, WANT my mother to live to be 105 years old!!!!

I’ve been doing this for 11 years now and although we have our routine and much of my life is on autopilot, I’m still emotionally and spiritually drained. Today is the 1st Saturday of the month, a day I have a standing requirement for my weekend caregiver to come so I can attend a club meeting. My weekend caregiver texted me on Thursday notifying me she had a conflict. Her grandmother had been in the hospital and the physician was schedule to do an evaluation on today. We asked if I won’t mind having another caregiver come out.

While I appreciated her notifying me first and of course I told her to be with her grandmother; however, the idea of someone new coming into my home and going through the whole process of orienting her to my home, my mother and “feeling” her out was just a non-starter. I’m just not up for it anymore. So in some respect I am limiting myself because if my weekend caregiver can’t come I’m decided now to thwart my plans and just stay home.

The level of comfort I have with my team of caregivers bring me so much peace because I know them, they know me, they care for my mother and we all get along and have a routine. The idea of starting over just stresses me OUT!!! I turned 53 on the 5th and now I’M JUST TOO OLD FOR THAT! HA HA

Now if my mother is to live another thirteen years!!! Oh my… I just don’t think I will make it. Now, having said all that… I do put my trust in the Lord. HE knows what I can bear and I trust Him. So if 105 is His will then that must mean He created me to handle it:-)

Caregiver tip:

I had been giving my mother Ensure for dinner. During the day she gets a good breakfast and lunch. Because she slows down in the evening I began giving her an Ensure as a way to ensure she gets the protein needed and it was quick. During Angel’s visit Deborah, my weekday caregiver, and I noted that momma had been having MULTIPLE bowl movements and they were loose. Angela recommended we easy up on the Ensure and to possibly use another protein shake. We did stop using the Ensure and VIOLA no more running stools. We give her a lite dinner, chicken pot pie, mac and cheese something soft and easy for her to chew…she loves it.

Today one of my friends mother died. I received a text first thing this morning asking to pray. I called her, prayed and cried with her. I’ve known her and her mother for over 3 years now having met them when mom and I relocated to Florida. I met her mother when she turned 89. See her mom and my mom are..were the same age, my mother being 6 months older. My friend and her sister had their mother’s 89th birthday party and invited me and my mom.

I remember being at the party and looking at their mother who was very much ambulatory not needing a walker as my mother did and she was in full command of her faculties unlike my mother and I recall thinking how I would like my mother to be in the same condition as her.

The following year when my mother turned 90 I invited them to my party for my mother. Ms. Violate had a great time. She was laughing and enjoyed the meal (the party was at my home and I invited a few friends) and watched has one of her daughter’s assisted my mother in opening her gifts. My friend commented on how much her mother enjoyed the event. As they left I kissed Ms. Violate on the cheek and said “We’ll see you at your 90th party.”

The months that followed her health declined. And at each year my mother made another birthday I often thought of Ms. Violate. I’d send her cards which my friend said she liked and kept. Sometimes she’d write me one in return. I had no idea how sick she truly was but today her suffering is over.

As I prayed and cried with my friend she admitted she wasn’t ready for her mother to go. This of course I understood but having witnessed the suffering of my father with cancer I have come to the realization that placing our needs /desires over the loved one isn’t good but selfish. I gently told my friend that she needed to look at the situation from her mother’s perspective. She had been in pain and now had the opportunity to end that pain and received peace and joy in her Savior. I told her that her mother would not make the transition until she knew she (my friend) was ok. My friend appreciated what I told her and we prayed. I prayed for peace within the family, strength for my friend, peace for Ms. Violate and that she’d have no fear in meeting her Savior. That was at 8:40am, at 2:30pm I received the text from my friend stated “my mother made a peaceful transition. thank you and I will be in touch soon.”

When one becomes a caregiver there is an assumption that you will “take care” of the person. Now “taking care“ of is an ambiguous term but most agree that it infers that you will see to the physcial needs of the person. Whether you are the one physically doing it or hire a person do it. Taking care …translates into bathing, feeding, walking, companionship, taking to the stores running errands. But more is required when the person whom is being taken care of “advances” with their disease.

Who is the person to sees to their insurance and healthcare needs? This too falls to the “caregiver”. Now, I find myself speaking with the insurance reps, coordinating between the insurance and the physicians office, arranging caregiving services, medical appointments, insurance coverage, social security. AND IT IS ALLOT!!!

I didn’t understand the difference between to the two and I suspect most caregivers don’t. It’s just something we naturally fall into doing but there is a difference. And on any given day or hour one of the roles, whether it’s caregiver or advocacy will take the lead.

Last week for me it was advocacy. Coordinating between the new medical equipment company who will bring out another electric bed and air mattress and the hospice medical company to remove the one currently here. Of course the hospice team was schedule to come prior to my being able to arrange with the new company. I literally said to the technician who was ”schedule for a pick up”, “Listen I haven’t coordinated with the new company for the new bed if you come now my mother will literally be on the floor.” He understood and told me to call once I had arranged with the other company.

The new company rep, Brittany, has coordinated with the hospice team and they are both coming out next Wednesday! Next was ensuring the weekend caregiver whom we have had for eight months now continues to come. Apparently there is some new person handling the schedules and schedules another caregiver to come today, Saturday. The caregiver informed me yesterday and I intern called and explained that I wished to continue with my current caregiver and that I wanted her to have right of first refusal on all of my weekend request. I went on to explain to her that prior to my making any request I have already validated with the caregiver that she will be able to come; therefore, there was no need to schedule someone else.

This switching of caregivers is something that I have experienced with EVERY agency I have used. WHY I don’t know. One would think that as mangers in the caregiving industry it would be well known and encouraged to established a habitual relationships between caregiver and client. For seniors and people with debilitating diseases they want routine and a familiar face! It is beyond me the reasoning behind the constant swapping. Of course I understand when there is an emergency but to do it just because I don’t get nor do I buy in to!

I don’t plan to write allot today. I’m tired, it may sound selfish or self centered but I am. It’s been now 11 years since my mother came to live with me. At first it’s was a wonderful honey moon then has the years came and went turned into a long and winding journey. A journey that has led me to in a closer faith in God, and closer relationship with my mother, a shedding so to speak of my need to be autonomous (one can never really do this on their own) and a strong sense of priority and self preservation. But at the end of the day I’m tired.

Tired of maneuvering between MEDICARE and MEDICAID, screening the endless stream of caregivers and caregiver agencies and structuring everything around my mother. I recognize that I am one of the blessed caregivers because I do have a ton of support. For the most part there really hasn’t been anything that I haven’t been able to do…yet I am tired!

It’s as if there is a string that has been tied around my ankle, at first I was resistant and resented it later it became a comfortable fact of life and for the most part remains that way yet now I look at it and long for the day when I no longer have it.

My mother has reached a steady state now enough that disqualified her for Hospice which is a good thing; however, I have grown accustomed to having a nurse come weekly. I’d like to share some of the things I observe while my mother was under hospice care.

1. The attending physician must submit the patient for hospice care.
2. Once the referral is accepted (by which ever hospice program your insurance uses) you will receive an “inpatient” visit. During this visit I met with the intake nurse who conducted a physical of my Mom. Taking her vitals and asking me a series of questions. During this discussion I learned that I could get a hospital bed one that will adjust both head and legs and lower and lift. I needed the lifting portion as changing my mother in her regular bed began to strain my back! One thing that has helped myself and my caregiver is the use of what we call a pull sheet. It’s a regular sheet that my caregiver folds so that it can be placed width wide on the bed. We place this under the chucks pads and then Momma is laid on top. What the pull sheet allows is for us to grab hold of that sheet which we ensure extend a little further on the ends to roll Momma from side to side when changing. This relieved the strain on my back and is more comfortable for Momma. We place the sheet so that it lays under her mid thigh and her shoulders. We grab the ends of the sheet and pull towards us and it brings Momma with it! We also received a recliner. I didn’t like but my caregiver used it for Momma transferring her from the bedroom into the den to give her a change of scenery.
3. Hospice personnel will come every week to check the status looking at vitals and overall progress or decline of the patient. They take over all supplies that are needed and will send out weekly resupplies.
4. When it comes to medications hospice normally will not refill medications that they do not deem vital. My my case all the memory medications that my mother was one and blood pressure meds. To my surprise that did refill most but the ones that they would not were continued to be filled by my previous method which was MEDICARE. I have been told that this is unusual so I’ll just thank God that it worked that way for me. But I don’t want you to be surprised if they will not.
5. Hospice is there to assist you and your loved one in the death process. A social worked came out and talked to me about WILLs, Health Directives, Do Not Resuscitate (DNR) documents, funeral arrangements. To my mother’s and my credit we had all those things in place BUT I didn’t know about the transferring of the body. Since we are originally from Texas momma will be buried there in a plot with my Dad. I was able to speak with a funeral director here who walked me through the process of transferring . Turns out it’s easy I pay for fee and flight on my end. I chose this because I have the funds and can pay immediately; however, that fee can be included in the funeral cost by the gaining funeral home and they pay the transporting funeral home (not ideal). I also spoke with the funeral home who will be the recipient of my mother’s remains so that we were on the same sheet.
6. Hospice may not treat developing issues such as colds, bed sores or should I say they sort of monitor but didn’t treat. I later found out this is the norm because they specialize in end of life care. My particular hospice team didn’t have a wound care specialist and my mother had a bruise that turned in a wound then just exploded. I was at my wits end and I was praying. It was during that pray time as I spoke to the Lord and asked for help. I suddenly got a vision for this local pharmacy that I had not been too. Why would I go there when we have CVS and Walgreen BUT I did. When I got there I spoke with a Pharmacist and showed her my picture of the wound. She immediately asked if my mother could take vitamins which she could. She put her on Zinc and Vitamin C then she stated “I’m going to make you a cream that we use in the hospital for wounds.” What I didn’t know was this this little local pharmacy had compound pharmacist. This are the pharmacist that make the creams and meds!!! She made the cream and told me to use it three times a day along with the cream the hospice team had been using. That cream (hospice) was only keeping the wound moist but was not promoting growth she told me . I found it interesting because the hospice team told me and my caregiver to change the wound every three days but it was draining so we were changing it multiple times throughout the day. The cream had and antibiotic in it (I could smell the wound which is a suggestion of an injection and although the hospice team using prescribing antibiotics for 7 days periods of time the smell would always return) silverdine I believe and zinc. I began using it immediately and in four days I could see improvement. The next week when the hospice nurse arrived I showed her the cream and asked it we could get it prescribed through them since this was a sample. She did and I paid out my own pocket. About a month passed and the Nurse practitioner came and told my caregiver to stop using it and return to the med that only kept it moist. I was out of town so didn’t fine out about this under I returned. As it happened when I returned she , Nurse Practitioner, would be there in 4 days. I called the local pharmacy and asked if the pharmacist would be there and if I could call her when the nurse practitioner arrived. When the Nurse practitioner arrived I told her of my concern of us stopping the one thing that had been helping in the first place. She said the silverdine was eating the tissue. So I called Lauren the pharmacist and they had a conversation. Lauren made a new cream and I picked it up that day and we used it. The Nurse practitioner told me that the best we could hope for was that it just closed but the tissue would not fill in. In my mind I was thinking “Nope it will heal completely” Within two months the would had COMPLETELY healed the tissue filled in and the wound closed. The wound had been open the beginning of March and it wasn’t until Jun when I went to the pharmacy and received the cream that the wound began to heal. I said all of this to say the person whom you are taking care of if YOUR loved one and YOU must be the advocate for them. I was determined that when it time for my mother to go be the with Lord it would be as a result of the disease and not anything else.

here are the before and after pictures!!! Gross but then SUCCESS!!

I call the cream the magic cream and we use it on everything. Part of my challenge is my mother is bed bound so her skin is paper thin and her muscle tone is gone. However she has no bed sores or pressure ulcers!!! Praise God!!!

This past week marked the anniversary of my mother loosing her mobility. It was January 2019, as I was walking with her to her bed after brushing her teeth and going to the potty that as we were approaching the bed she began to tilt. I immediately came close behind her just in time to catch her as she and I both went to the floor. This is what I have learned is an assisted fall. It wasn’t hard but it was hard for me to get her into her bed. I did eventually.

I thought she was just tired from the day and she would be better the next day which was a Monday. But she was not, not only was my caregiver unable to get her out of bed she had a hard time feeding her. I called the physician he thought she had an infection and prescribed antibiotics. Which did not work.

Two week prior my mother had one of her episodes of being non responsive. Deborah called 911 they took mom to the hospital where they ran test. The hospital neurologist informed me that this was a symptom of her disease and as long as she was still breaking she would have moments like this. I asked if he would run an EEG to ensure she was not having mini brain seizures. He did and the result was that she was not BUT her disease was extremely advanced. So he took my mother off all her memory medications. Her aricept, namenda, and the Lamotrigine.

My questions was “if we take her off of these will I see a dramatic change…because I don’t think I can handle that.” He assured me that the medication weren’t working now so no! Two week later she lost her mobility. I called the phamacist and explain what had occurred three day after she fell. My specific question was whether my putting her back on the three medications would harm her since she had been off of them for two weeks. He stated that it would not and then as an aside stated “her losing her mobility after two weeks of being off the meds does suggest that they were doing something. You can put her back but…” I stopped him “I know I don’t expect her to make a full recovery.” Which she didn’t.

I took her back to the hospital just to ensure she hadn’t had a stroke and she had not. As God would have it the same neurologist came in. I politely conveyed to him that I believed the medications had been working and that we took her off prematurely. That I didn’t expect him to agree with me and we would just agree to disagree. He reluctantly put back on the meds.

So here we are a year later. Myself and Deborah have adjusted to our new normal. I was able to get a Hoyalift, hospice brought in the electric bed. Last year everyone assumed that my mother would be dying soon BUT she has reached a steady state. She will be discharged from hospice sometime this month.

Now is the other headache NO ONE SEEMS TO DO HOUSE APPOINTMENTS!!!! I was extremely frustrated with trying to find an attending physician who would come to the house. After about a month I found two here in Florida. Visiting Doctors and Mobile Physicians Associations. GREAT I thought BUT ,and there is ALWAYS a but,……..they don’t accept MEDICARE through third party insurers such as Humana,Ethan, United Health etc. They accept basic MEDICARE…so I had to make the switch.

We were visited by our new physician, a Nurse Practitioner, last week and she was extremely friendly, thorough and listened….. Whew

When I think about myself as a caregiver, I didn’t realize how this one added level of responsibility would change my entire perspective on life in general. As I have grown into my role as caregiver to my mother I now look at the world through a caregiver’s lens. I was blessed that we lived in Hawaii when my mother came to live with me. That culture embraces having seniors in the community. Everywhere we went, and I took my mother with me everywhere I could, she would get greeted warmly and establishments would make accommodations for us. I often wondered would we have received the same treatment if somewhere else??? I’ll never know. I look at our healthcare system that really makes it hard to maneuver to get to the appropriate care one needs. I look at society and how we view seniors and those who take care of them.

When I was in Hawaii I didn’t have the luxury of having a caregiver …I was the caregiver. I call it a luxury because it is. It can cost up to $25 dollars an hour to have an in home health aid. Do I think that the care and service they provide is worth $25 no I think they should get more!!!! However, our system doesn’t even allow them to get paid $25 often times the actual worker is only paid minimum wage because you are paying the the administrative cost of the agency providing the caregiver!!! This is the person who is coming into your home and caring for you loved one! I find our system ridiculous, I guess I think caregiving for my mother is worth more than that and should be recognized as a worthy profession and the pay should reflect it. I don’t know how much caregiver’s who are employed at facilities get paid but I suspect it isn’t much more!

When I think about you, the paid caregiver’s, I can’t help but wonder what you experience. I know my caregiver, Deborah, has become a part of my family. She takes excellent care of my mother and affords me the opportunity to have a life!!!! How much is that worth…PRICELESS!!!! When I see the care that she gives my mother I’m moved to tears. She cares for her as I do. I know when it is time for the Lord to call my mother home it will be hard on me but it will also be hard on Deborah. One because my mother is someone whom she loves and is now gone and two we have been her source of income for over three years! Being a caregiver is HARD no matter if you are the relative who has the role by default or the caregiver by profession. I can’t imagine all the experiences professional caregiver’s have. Often time they are the only one who is actually caring for the person whether it is because they have no family or the family doesn’t seem to want to be involved…then they become the family, or working in a facility where there are so many to care for! I can only imagine the emotional stress and physical stress you go through. But I want to THANK YOU for your service!

What I want to leave you with today is no matter which type of caregiver you are, YOU MATTER and the work you do is not only IMPORTANT to the person whom you are caring for but to our society in general…whether society recognizes it or not!

After my mother was diagnosed with Alzheimer’s it was like a slow wave that came over me. Although I was relieved at now knowing that it wasn’t my imagination I was SCARED OUR OF MY MIND at what her disease meant FOR ME! In the coming weeks I imagined all that I would have to give up…my hobbies, my career, my independence in essence MY LIFE. Truth be told when she was still living on her own in San Antonio Texas many of my relatives told me that it was “time for me to come home and take care of her.” Now at the time no knew of her disease it was just everyone’s consensus that her living on her own at age 80 wasn’t good. No one seemed to care about me and what I wanted. What did I want….I didn’t want to deal with the possibility of me being chained to my mother having to give up any aspect of ME.

All of a sudden I was responsible for her and EVERYTHING that that entailed. To my mother’s credit she was very deliberate with her thinking and planning. So I was already on her checking and savings accounts, she had done everything she was required to do for MEDICARE, year’s earlier we had gotten her will done, me as power of attorney and me as her healthcare executive documents. So all the hard work, so to speak was completed.

I would add IF you have not had a discussion with your loved one’s, no matter their age or if they are in good health, please sit down and discuss what they wish done in the event they are no longer able to make decisions for them selves! It will make it so much easier to absorb the weight of an unforeseen illness with all the legal documentation being completed prior. TRUST ME!!! Now later as I provide insights to how I manage caregiving for my mother I will share with you everything that I know when it comes to types of caregiving agencies, the difference between MEDICARE and MEDICAID etc. And if you wish to share your own experiences please do so! This blog is for sharing knowledge and tips to help you thru your time of caregiving!

Remember YOU ARE NOT ALONE!!!

My mother came to live with me while I was assigned in Hawaii. At the time I was an active duty military officer in the U.S. Army. She was 81 at the time.

I am an only child and my father passed away when I was 12. It’s been my mother and I ever since and we are very close. The idea of her living me with was a little scary but I didn’t want her living on her own anymore. So I told her she would come to live with me!

The first two years were great! I’d come home to cooked meals and on the weekends we will see the island. I’d take her everywhere with me. The Hawaiian culture embraces seniors and everywhere we went she was the center of attention…which she loved!

But I began to notice things, her forgetting where things were. She would pick up the TV remote control when the phone rang. Her primary care physician gave her a remedial test in his office and declared that she “had a little” dementia. But as the months went by I knew it was more.

On the island of O’ahu they have the Hawaii Pacific Neuroscience Center. I took her there where they did a comprehensive testing from and MRI, EEG. She meet with a neuropsychologist, geriatrician and finally the neurologist who then told me she had Alzheimer’s.

This declaration was like a blot of lightening and a breath of fresh air. Because now I have an actually disease and we can go from there right? So I thought but with each day, month and year I have watch this disease transform my mother into someone I had to learn to love and get to know.

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