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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Hi, I’m Greta and I have been a caregiver for 11 years now and it has been an emotional roller coaster. The first 8 years were extremely difficult but as I grew in my faith and compassion for my mother the last three years have been more manageable and even dare I say…enjoyable!
In this blog I want to share with you my experiences and provide a place for you to have a voice. Your own unique voice. There will be no judgement or criticism here. While the title will encourage you , as the caregiver, to “scream” I do not advocate for screaming at your loved one! The screaming that you need and must do can come in the form of an actual scream..somewhere in a closet or outside, or your scream can be going for a walk, watching TV, meditation etc. Whatever you need to do to let the current emotion you are feeling out so that you can continue to another day.
Let’s begin and take this journey together, you are not alone!
Well, it’s the HOLIDAYS!!!! That’s what I feel everyone around me is experiencing but not me. It is the first Thanksgiving without her. Truth be told I’m having very mixed emotions. I put out all my Thanksgiving decorations the beginning of October. I attended a zoom grief sharing seminar because I just didn’t know what I would experience so better prepare for what may come.
Initially, I thought I would stay home, but then I had three invites so I went to a friends house. I even baked a delicious devils food chocolate cake. I had a great time. But after I left I came back to an empty house and the saddness returned. I miss my mother!!!!! Even though for the past two years she was bed bound and could not see the house decorations that I put out each year, still she was HERE I could feel her. Now I can’t because she isn’t.
I miss my mom but I do not miss all that came with caring for her…. If I’m honest. I do not miss having to get up at 6am to give her the thyroid meds, or changing her adult diapers, or fighting with her to eat. BUT I MISS HER. I miss not feeling her here, I miss not going in the mornings and throughout the day and kissing her cheeks and I miss singing to her.
Yep the holidays are here, my Christmas decorations are out …no invitations yet. I am very Thankful for all that God has blessed me with especially the wonderful women he gave me as mother. And I will celebrate the birth of my Savior and take comfort knowing she is with Him this season. I will celebrate, as I learn to live with the loss of her not being here.
Well, I am on my vacation! And I must admit it is really nice. I’m in Hilton Head South Carolina and it is beautiful. What strikes me the most is the weather. Although it is still summer and the sun is out, the humidity is so much lower than in Florida, Praise God! But first let me back up and tell ya about the prep prior.
I left on Friday and the week leading up to my departure I had scheduled appointments, and the ending of my very first series of my Pod cast Caregiving Is a Ministry. I was also editing my manuscript for the last edit. So if you haven’t figured out I was busy and a little stressed. So much so that I really didn’t begin to start packing until the Sunday prior.
Now I can here you, but what you need to know about me is that I am well organized and planned…to a fault at times. Remember my mother was like that. Normally, I do begin a week out for packing but I usually have everything in my head that I want to pack. This time I did not so what I put in the suitcase I wasn’t completely confident that it was what I wanted or needed.
On Thursday morning, I woke up at 3 am tossed until 4am and the got up because I knew what the problem was. My mind was unsettled about my trip and my packing and just the tying up of loose ends before I left. So I finished packing and I shredded documents.
Note: All that unsolicited junk mail I received in the mail that has my name and address on it. I shred…I do not want to be a victim of identify thief and this is one way to help ensure that. So I cleared that out. I wrote my list of tasks that I needed to do prior to leaving on Friday. This took an hour and I went back to bed with a cleared head.
Friday I got up went to the gym, washed the last basket of cloths and did my devotional. But all the while I felt this heaviness. It lasted for about an hour until I realized what it was. I was feeling said about having to do all this alone. It had nothing to do with Momma because if she were alive and not bedridden I would have had to add her stuff to the mix. Which is what I was accustomed to doing for twelve years. No, this heaviness was my recognizing I do longer wanted to live as a single women and that I want my Boaz! So that is what told the Lord..
The funny thing is once I talked to Him about it the heaviness left. Of course I am not going to tell you that I met my Boaz already! I have not but I now know that I am ready for partnership. As I was caring for my mother, I didn’t even have the band width to think of dating and I was ok. No loneliness, not even thinking about it.
Now, I’m not obsessed but have opened the door:-) So here I am here in Hilton Head really enjoying my alone time. But thinking of Momma as well. Wishing in a sense she could be here. I have envisioned her on the phone with her sister telling her about our unit then about the landscape and the food we have been eating. “We will most assuredly will be gaining weight all the food we have been eating.” I can hear her say.
But I know she would be so happy just because she would be here with me. I know that my mother was so very proud of me. She told whomever would listen all the time, and she would tell me. I know neither she nor I knew all that I would be able to accomplish through a military career, nor what God is going to do through me now. No, part of her joy was seeing me, the product of her upbringing, excel and enjoying my life unlike she was able to do as a young woman. Which in turn has become part of my joy, knowing she continues to be proud of me!
It’s been almost two months now since my Mother has gone. My mourning process was somewhat easy I guess. When I returned from Texas I came to a house that was silent. Truth is, I enjoy silence so that wasn’t jarring, what was jarring was my ability to do what I wanted. Not hindered by the responsibility of being home to ensure Deborah would get off on time. NoT having to get up at 7am to give Momma her thyroid medication, no having to Prep for meals and feed her no bathtime.
I now was faced with more time that I had ever had. It was new, when friends would ask me to go out on a Saturday my initial thought would “no, I have..” then I would hear a soft voice say “yes you can”. The truth is prior to her coming to live with me this was my life, but the passed twelve years I adjusted to my role…now I had to adjust once again to living my life with out her.
Of course this is what she would want as anyone wouldn’t want their loved one to mourn their loss to the extend that it paralyzes them. Now I needed to recapture my freedom and I have. Learning to “go out” without the responsibility of caregiving. It is freeing but also a little sad.
My house is full of memories of her that I will forever hold dear to me. I have pictures of her and I, pictures friends took of her while she was in Hawaii with me. I have several of her hats on stands throughout the house ( it’s very tasteful nothing tacky) all reminders of my wonderful mother. A woman who gave her all for me and hopefully I can now say I gave my all to her during her last remaining years here.
I buried Momma last Wednesday, 9th Jun 2021, in San Antonio Texas at Greater Corinth Baptist church. This was the church where she was ordained a Deacon and served with distinction. The service was wonderful and I know she was proud. She was laid to rest near her husband, my Dad, and with that I said it is finished!
But the reality is it isn’t. I now face the days without her, without the responsibility of caring for her. I find it ironic that I had been fantasizing about my life after caregiving and how I would have so much time on my hands. Time that I could do with what I chose to do. And now that time is here and I am learning to enjoy the freedom I have but I am grieving.
Sundays are harder. As you know I took on sole responsibility of caring for her on the weekends. Sundays, during COVID, I would clean her up and give her breakfast all while watching and listening to Alfred Street Baptist church. After I finished with her I would pause the video on YouTube and then get my breakfast ready. Bring in a TV tray and then eat and “worshipped” in her room. It was my way of “going” to church with her Or worshipping with her. So Sundays are harder.
I wake up and remember that I do not have to feed her. Saturdays I no longer have to comb her hair and give her the manni /pedi’s. Perhaps I should say that the weekends are harder. But I know in time it won’t be as hard. I have wonderful memories of my life with my mother. I have no regrets and I know that I did everything I could do for her as her caregiver.
A new chapter in the my life is beginning, and while I am excited I will take the time I need to grieve the lost of a most amazing women.
Friday, May 28, 2021 at 8:15am my mother was reunited with her Savior!
Monday (24th) momma had developed rapid breathing. It was as if she just couldn’t catch her breath, It wasn’t bad but unusual. Tuesday it progressed and I called her physician who would be able to come out the following day. The entire time momma continued to eat. Her digestive functions continued and she didn’t appear to be in any pain.
When Angela arrived that Wednesday evening `Momma’s heart rate was 160 and O2 level 92. “Does your mother have a DNR” Angela asked. “Yes” I replied. “How aggressive do you want to be?” Was her next question. She then proceeded to tell me that we were at the in of life stage. I have always wanted Momma to die at home with me so that is what I stated. We did called hospice, the same hospice we had back in 2019, within an hour there was an admitting nurse who ordered O2 and morphine. I had everything by 11pm that Wednesday.
Thursday morning the team we had been assigned had dispatched a nurse. He further assessed momma and prescribed additional meds to help with the drooling and he instructed us to stop feeding her. That is when it hit me…we were coming to the end. I cried, not because I was shocked but in somewhat of a disbelief that my season of caring for her was coming to an end.
As much as I have dreamed of the day when I could go and do what I wanted without having to make arrangements for her care, she’s still my mother and I love her. I cried because I knew I had done everything I could have possible done for her and her care. Making her latter years fun, exciting and peaceful. I cried remembering all of the wonderful ways she cared for me as a little girl, teen ager, young adult and as a maturing women.
Thursday night I busied myself with plans for Friday and before I retired the for the night I kissed her on her forehead and told her what a great Mom she had been. That I loved her and was very glad that God put us together. When I woke at 4am Friday to administer the morphine and other meds her breathing was still heavy and there was a grueling sound. I called hospice and inquired from the 24 nurse. Then I requested that a nurse be dispatched.
As I waited for the nurse I went into momma’s room. I prayed in the spirit over her and then I leaned in to her ear and whispered “It’s ok, you can go home now. I will be ok. You can go home., stop fighting” The nurse arrived at 6am and assessed then consulted with her team. They decided that I should administer morphine every two hours. “Really?” I asked “How will I be able to rest?” “Oh, I‘ll contact your team to see if they can arrange for someone to help you.”
I had called Deborah and asked her to come so I could go to the gym and run an errand. I didn’t want Deborah to have to go through the process of watching Momma die. She was a fantastic caregiver but this surely wasn’t in her job description. She arrived at 7:30 went in and greeted momma. I could hear say “Hey Punkin” which was one of the pet names she had for my mother. Deborah returned to the kitchen area where we were and said Momma had opened her eyes a little for her. This made her happy.
The nurse showed me how to crush the meds and make them into a paste and put them inside my mother’s cheek. Then she finished her documentation and left. I went into my bathroom to brush my teeth and change for the gym. I had just finished brushing my teeth when Deborah rushed into my room “Were the meds suppose to make Momma not breath? They are too strong!!”.
Of course in my head I was thinking “what in the world is she talking about “ I followed her to momma ‘s room and there my mother lay as if sleeping. She had taken her last breath with Deborah sitting in the room watching her.
”Deborah,Momma is gone. “ I said “No“ Deborah cried “I asked God not to let me be here when she left and He didn’t listen.” I was holding Deborah, crying myself but looking at my mother’s body. “Deborah she waited for you. She wanted to say goodbye to you., “. We both cried then I called hospice.
I am grateful to God for the honor of caring for His precious daughter, my mother. It has been a twelve year season with ups and downs but God has given me the strength to endure this season with His grace and mercy. My mother was a great women and it was my honor to care for her.
Now, I step into the next chapter of my life. She now occupies that cloud of witnesses in heaven cheering me on. I know I will see her again .
Well done my servant, well done. I could hear the Lord saying to her as she entered into His presence. And I also heard Him say that to me. My season of caregiving has come to and end.
This morning as I was going on my Saturday walk as I came near to my home, my neighbor Jennifer asked how I was. I said “ok”, “Just ok?” She replied . “Yeah, I’m ok just feeling melancholy” she then said that she was lift me up in prayer. The funny thing is I hadn’t really realized that I was feeling that way until she asked. But yes I am feeling melancholy.
Momma has been doing well….but she has begun her not eating spell again. She holds her lips together when trying to feed her or when you give her a sip from her sippy cup. She went through this about four or five months ago and then recovered so I’m not sure what to think this go around. The ups and downs of caregiving just seem to weight on me today, never really knowing when the “end” will come wondering if I will be ready.
I know I’m shouldn’t try to “plan” for her last day. Of course not speaking about the documentation that is needed and in our case already prepared. I’m talking about how I will feel when she is really gone. Gone gone. It brings tears to my eyes yet I know that in the middle of the tears there will be a release and a freedom. Freedom to step into the next chapter of my life.
This past Thursday, Momma received her second COVID vaccine, and once again I have been giving her Tylenol just to ensure she isn’t In any discomfort and to minimize any side effects. To God’s grace she hasn’t had any and is doing really well. It gets hard to write when things are just status quo. Momma continues to do well there isn’t anything unusual that is occurring. Her eating is good and she is talkative…which is really gibberish but she’s saying and responding.
My spirits are up and I am dong well also. Nothing really to report. I continue to write and will have my first Christian non fiction novel, first novel I’ve EVER written, will be edited in July. I found a professional through a writing website called Reedsy. They have all sorts of tools for aspiring writers and a pool of professionals to assist with anything. The editor that I have hired is in the UK and I think he and I will work well together. I am mentally preparing myself for the “critique “ he will give. I know I have a good story and there are more stories in me but I will need help with word smithing and grammar. All of which you know because this blog is raw and it proves I will need Help:-).
The writing started back in 2010 when I felt led to write a memoir about Momma and I and Alzheimer’s. I have been compiling notes and thought I would write that prior to my leaving Hawaii. How naive I was. God definitely has other plans for me with other writing assignments prior to that book being put to paper!
When I look at the arch of my journey with God it amazes me. I am somewhat in awe and fear of what’s over the horizon but the one thing I do know is God has led the way and I will follow!
I know it’s been awhile since I have written, just didn’t feel like it. But this week I do! Why? Because I just want to express how thankful I am that God has given me the grace and ability to take care of His daughter, my mother. Last week I learned that Hillsborough County was offering mobile COVID vaccines. I contacted the Emergency Management Center on Monday , and sure enough they were. Tuesday I received a phone call with an appointment for Thursday. Momma received her first COVID dosage on Thursday. I immediately gave her Tylenol for three days to help with any soreness or pain. She is doing great!!! She received the Mederna vaccine so her second dose is in a month.
Deborah and I received the Pfizer which is the three week for the second dose. We both are fulled immunized and Momma will be soon. Today as I was feeding her breakfast ( Oh, she’s back to EATING her puréed meals…no shakes ) She looked so cute. I had done her hair yesterday in two braids and her skin was glowing. I told her “You are so pretty!” And she blushed!! Then I said “you know that I love you?” And she nodded! Thankful!!!
Mom seems to be back. Of course this is relative, it means she is eating her puréed meals. Deborah and I no longer have to placed them in a blender….. all of this by just taking her off of Gabapentin? She had blood work done that revealed she was dehydrated and that her kidney function had drastically decreased. So Angela recommended I order Liquid IV from Amazon. I did and Momma likes it and now she is peeing all the time. She is now alert, alert enough to say no to me giving her a spoon full of mash potatoes! We’ll see how long this stage lasts, until we swing back in the opposition direction.
Momma is doing much better. Well, as one can expect with Alzheimer’s I guess. We, Angela and I, made the decision to take Momma off of her Gabapentin. It was originally prescribed for pain. Angela said that she ”may” perk up a little. And she has. She opens her eyes and has started “talking” again. Of course the talking is gibberish but she is responding to questions so there is some degree off awareness.
I know it is possible to over medicate but Momma has been on these meds for years. I guess with the advancement of the disease the meds become too potent. We now put everything in the blender and she sucks it right down. We had blood work done to see how her organs are doing and I know her kidney’s are slowing down because she urinates really once a day.
My father had esophageal cancer and we had to blend everything up and feed him through a port in the stomach. This week I couldn’t help to draw the simulates to this and me how feeding momma “shakes” although there is no tube to place them in.
I take one day at a time. I know I’m doing all that I can for her and that she isn’t in any pain. I am so grateful to God that she is here with me and not in a hospital or nursing home where I would not be granted access to her.
Deborah gets her second COVID doses today. I still haven’t receive my first. I’m not in a high risk category but I think I will speak to someone about my being a caregiver and perhaps that will escalate my place in line.
Caregiving.....Screaming is allowed! 