Caregiving…..Screaming is allowed!

I really don’t know how to describe the ups and downs of this journey of Alzheimer’s with my mother. I know I wrote a couple of weeks ago that I knew the end was coming. And it definitely looked that way; however, now she seems to be at another “normal.” All of her meals are placed in the blender and I add some ensure and she drinks them.

Her bodily functions has decreased, as I guess it would because she’s on a liquid diet, to where it seems as if she holds her urine until the end of the night. But she is more “present” and is responsive. I had Alfred Street Baptist Church on line worship service on today while giving her the breakfast shake. As she was drinking I asked it she would be willing to move to Alexandria Va with me so we could attend that church. She shuck her head no! I laughed.

What am I do think with this? Is she dying, yes, do I know the time or day no. She’s back to grinding her teeth again and I think she has lost a tooth. The one in the front seems to be gone. There is no cavity left just an empty space. Where Or when she lost It I don’t know. These last days are just emotionally challenging. I want to make sure that she is comfortable and not in any pain. Yet I’m unsure as to what additional medical considerations I should do? Do I call The Tooth Fairy, should I have blood work done to test her organs? Why do I hesitate? Because I have made up my mind that unless she is in distress or pain I will let go and allow The Lord the call her home. So now I try to enjoy our time together and I wait.

This week I launched my. Podcast Caregiving is a Ministry!!!! So very excited

Angela came by this week for Moms monthly visit. I shared with her about her medication and how it was too strong and we talked about hospice. Since Mom appears to being doing “better” I don’t think I need it now. The truth is I know I will need help if her transitioning is long and drawn out. Angela gives Momma three months, I was thinking the summer but I guess what is a couple of months difference.

My prayer is that one day I wake up go into her room to start the day to discover that the Lord has called her home. That is what I would like, watching the process of her not being able to eat or drink or her bodily functions cease is a little too much for me.

Yesterday she urinated once. This morning, as I laid in my bed, I wondered whether I would find a full diaper with both a bowel movement and urine or just a little bowel movement like yesterday. I prayed that I would have a heavy diaper to change. I couldn’t hear her grinding her teeth but I hear her that she was up. I went into her room and gave her the thyroid medication.

As I washed her faced and brushed her teeth I chatted with her reminding her of my singing; last Thursday I sang hymns and prayed with her. Everyone in my family, on both sides, can sing…except me…..But I can make a joyful noise:-) Then it was time to change the diaper…and thanks be to God it was FULL of both a BM and urine!

It’s the small things now that give me the greatest joy!

Glory to God!

Last week Momma was extremely sluggish. She couldn’t eat or drink. I’d put her sippy cup in her mouth and she wouldn’t or couldn’t drink it. Her lips wouldn’t wrap around the sippy portion and the liquid just ran down her mouth. Eating was the same way.

I confided in two of my cousins. I cried to one about how hard it was watching her die and she told me “You know why you’re going through this right?” I got real quiet because although I was pretty sure I knew what she was going to say I didn’t want to hear it nor think it appropriate. Her response “you’re going through it so you can help someone else.” My response “I don’t give a shit about someone else at this time. It is about me and my mother and watching her die!” This was met with silence.

I was so pissed!! When someone is grieving they don’t want to hear about what you’ve done or what someone else has been through they want someone to LISTEN to them and just be there. People are quick to offer all sort of “advice” when what they need to do is shut up and listen.

Later that same day in the evening, I was speaking to another cousin who asked about Momma. I told him she was advancing and that I didn’t expect her to be here by the summer. His response “Oh, man, well..well, you be strong you be a soldier!” My response “I don’t have to be strong for anyone. When I want to break down and cry I will.” That was met with silence.

I guess perhaps I just have some cousins who don’t know what to say! Later that week after I had a hard time of getting momma to drink her Boost on of my sisters in an organization I am a member of called. It was a butte dial but she saw that she had called and then called back. That I know was God. She asked how I was I told her not good and cried AND ALL SHE DID WAS LISTEN!! How refreshing she let me cry then asked if I had called hospice. Funny, Momma had been on hospice for a year yet I had forgotten all about it. It was like a weight was lifted. Then she told me that whenever I needed to talk and cry and fall on the floor she would be there for me! That is what I needed and I very much appreciated!

As you know momma can really get load with grinding her teeth. So loud that sometimes I have to shut her bedroom door so I can sleep. I asked her physician if I could give her some anti-anxiety meds that she had from when she was under hospice care. Angela stated those meds were too strong and wanted to give her something less potent. Well, when Momma didn’t take her meds on Saturday (because she couldn’t drink them down even being crushed in the shake) which included the anti-anxiety the next morning she was more alert! Since then she’s been much better since. Actually drinking from the sippy cup and eating! So, looks like the milder meds are too much also.

Angela comes this week for her monthly visit and I’ll talk to her about the meds but also about hospice because even though she is doing “better” she is entering the transitioning period.

Yesterday I woke up and all I wanted to do was cry. The truth, is for the last couple of months my emotions have been just underneath the surface. For anyone interacting with me they see a funny, active women who is pursuing her dreams. Underneath I have deep sorrow and sadness. In watching the various TV programs that I do…I’m a nerd so my programs are PBS! Many “experts” are saying do the the pandemic and the political toxicity that exist today, many people are suffering from a mild to moderate depression.

Well, I too suffer that way. A feeling of hopelessness but I know that for me the cause is due to watching my mother slowing die!!! She’s dying plan and simple. Yesterday it was so hard to get her to eat her breakfast. I had to place it in her mouth and then she would hold it. Not swallowing . I wanted to just strangle her. I wanted to scream and yell and tell her how difficult it is to help her and to feed her. I wanted to shake her and make her open her eyes and see the anxiety she was causing.

But, my rational self told me that my mother wasn’t doing any of this on purpose. IF she were in her right mind, she wouldn’t do this. So then I turned to God. Yep, I was mad with the very being who breath life into me! I was pissed and I wanted to scream at God and yell at the top of my lungs “Why would you allow me to experience this? It isn’t fair and it damn sure isn’t fun!” Then the Holy Spirit in me reminded me that God is good and that although this is a crap sandwich…He will see me through.

So yesterday, after I fed my mother breakfast I went about my day. Working on my school group project, writing more of my novel and then bringing her out into the den for her mani pedi. I soaked in the tub and just chilled. This morning I awoke with a quietness in the house. I thought “is today the day Jesus calls momma home?’ I was scared because as much as I don’t want to go through this process I don’t want to see my mother go either. So I lay awake with the silence, then I heard the familiar sound of her lightly grinding her teeth. I smiled and got up.

Happy New Year! The dawning of yet another new year. My reflections take me back to 2019 when my mother lost her ability to move. Then I knew the Lord would be calling His beloved daughter home. But here we are two years later and she is still here with me. As one would expect she has declined and continues to decline. My emotions run rampant with highs and lows.

I know we are entering into the last stages based on her eating habits and her elimination of waste. She eats about half but I have to put the spoon in between her cheek. It’s as if she doesn’t know how to open then there is the willful look in her eyes that tell me she doesn’t want to eat! Lol. A combination of both. Even her drinking..it takes her awhile to latch onto the sippee cup and drink. In the evenings when I give her the boost sometimes she holds the liquid in her mouth.

When I change her diapers I’m noticing less bowel elimination. She use to poop three times a day and it would be heavy to medium. Now it may be once and if once it’s isn’t robust. I know the shake at the end of the day contributes but historically it just made her BM running. Now they don’t resemble that. So I know the process as begun.

My mother continue to smile at times and japper. She has gone back to grinding her teeth so the physician put her on an anti-anxiety medication Sertraline 50mg. They work!

I don’t entirely how it will end but what I do know is that as long as I have my mother with me, I will continue to love on her and comb her hair give her pedicures until she takes her last breath.

I love her.

The last time I blogged I was concerned. Concerned that momma had slowed down with eating. I had to make breakfast smoothies and really it was a struggle to get her to eat. Now, even though there has been “some” slowing down she’s seemed to have ”bounced back” so to speak. She eats her puree’d meals for breakfast and lunch and I give her a Boost or Ensure with a banana. Deborah will make her pancakes and oatmeal and give her soup and she eats. Most days she eats half then there are the days when she eats everything. She had blood work done last month and everything is good!

This journey has taken me to places I never thought I’d be, scared, mad, angry, loving, bewildered etc. But through it all, God has been faithful and my relationship with Him as grown. I know that if it were not for my faith I would have failed this test long time ago. I’m grateful that I have a relationship with my Savior and thank Him each and everyday for His goodness.

Momma being the great Mother that she is, brought me up to know who Jesus is and to accept Him as my Savior. That is the greatest gift she gave me and I thank her and the Lord for that gift everyday.

Momma and I are well and it’s all good!

By now it should be no surprise that as my mother’s disease advances it means she’s getting closer to death. It is a painful process to watch. She doesn’t eat as much, half of her Moms puréed meals. Deborah gives her breakfast and lunch for dinner I give her an Boost. Ensure seems to giver her the runs! I fortify it with half of a banana. During the weekends I make her breakfast shake ,which she seems to like ,then she gets Moms meal and the shake for dinner.

Deborah can get her to eat cucumbers and croutons form her salad but she is slowing down. Her Eyes are closed most times and she’s not that interactive as she has been. It is so hard to watch…. I have my good days and not so good days. I go to God and ask Him for His strength to continue the process, which He does. I’m comforted knowing that my mother isn’t in any pain and that she is here with me.

During Angel’a visit this month she stated that once Momma really stops eating, because the brain isn’t sending the instructions to the body to eat and swallow, we can insert a feeding tube. Immediately I told her that would not be an option I’d pursue. Once that times comes I will allow the natural process take it course and say goodbye.

Ok, so after my breakdown last weekend I decided to see how I could give Momma the nutrition that she needs and make it easier for her to digest while making It easier for me to give It her. Of course, I am sure those of you out There already knew about breakfast smoothies and although I knew about them, they just were not something I really thought about…until now.

So yesterday I tried one. I put some Greek yogurt, tablespoon of oats, handful of spinach, frozen strawberry and peaches and I found frozen avocados!! Put all that in the blender with some raw honey and viola! She drank it!! However, I need to work on the consistency to make it a little more liquid than normal smoothies for her to take. Even though she drank it all it took her 25 minutes. IT was funny because she’d drink a little then look at me then look around the room then drink a little more. While I laughed the main thing was …. she liked it and that made me feel good. She got her Moms puréed meal for lunch and then ensure and a banana for dinner!

When someone is bed ridden and not active they do not need the normal caloric intake that active adults need. Finding that balance is a challenge and I Know this stage of our journey is only for a season, but for now I’m happy!!

Today, all I could do was literally scream. I screamed loud and long! Momma slowing down, she is loosing her will to eat. She pockets the food in her cheeks and just holds it. Now this presents two challenges: 1. She isn’t really eating so no nourishment and 2. If she’s holding it then falls asleep then she could choke! So I try to give her water in an attempt to coax her into swallowing. Well, she’ll swallow the water but still hold the food. I guess that’s an indication that she has some will left.

This morning as I had our church service on line, I grabbed her by the cheeks and yelled “ I need you to chew and swallow Momma!” And she just looked at me. I felts like strangling her out of my anger and frustration! Instead I went into the bathroom and screamed!! I didn’t care if anyone heard me I just had to let it go. After screaming, I cried then blew my nose and went back into her room.

And there she was, as if she was going anywhere, with a smile on her face. I went to her and kissed her on her forehead and apologized for yelling at her. Then I went to the kitchen and got some pudding. I began to give her spoons of pudding until she realized what it was and began to take it. As she ate the pudding she finished what was in her mouth. I was able to give her a little more of her eggs and although she didn’t eat all of the pudding it was enough for her to have finished 2/3 of the eggs. I guess I’ll use the remainder of the pudding for lunch!!

It’s getting hard. But I put my complete trust in God and He has and will continue to give me the strength to endure this season!

The last week was hard, I was really in a slump. Not sure if it’s because I’m (pretty sure) peri menopausal but I just really had no motivation. I’d wake up and go through the motions of the day. I’d write, I’d walk and pray, I participated in my zoom Bible study but in the back of my mind I just kept thinking “what’s the point?” I am not suicidal but I did question “why” how can I go on with this lack of commitment to life as it is and how can I change it?

The news is just scary! You really don’t know whose telling the truth and is there really a party or person who has the best interest of EVERYONE? People are so myopic in their views, thinking only of themselves, ungrateful, unappreciative and down right crazy at times! All of this coupled with the reminder that an upcoming Mission trip to Guatemala has to be canceled. It was supposed to have occurred in April but then was postponed until December. But how can I go out of the country with the pandemic seeming to resurge and my mother here at home? The answer is I can’t!!!

I’m not sad about it I know its the right thing to do but it just all came to a head this week. I guess that’s the way it works. Everything sort of piles up on you then you just break a little. But of me my faith is the only thing that really secures me. Even though I had a funky attitude this week and somewhat went through the motions I know that God is in control of my life. I was open and honest with Him about “what’s the point?” And what I got was silence. However, I know that silence from Him is ,for me, to follow the last thing He instructed me to do. Which way back in 2008 he told me to “take care of my mother” and then in December of 2019 we told me to “write” so that what I continued to do. I continued to applied one of two of my favorite scriptures Proverbs 3:5-6. Trust in the Lord with all of your heart and lean not to your own understanding, in everything acknowledge Him and He will direct your path.”

Yesterday I began to feel like myself. Last night one of my good friends texted me asking about how October was going so far. She’s actually my accountability parter we chat on the 3rd Friday of each month but she felt she needed to reach out to me last night. That was God. I replied “it sucks but I have been productive”. Then she called:-) and we talked and laughed. This morning I got up and got momma ready for breakfast and turned on our churches online service. There as I fed momma and listened to sermon my spirit was renewed. One of the positive out comes of this pandemic is that I get to worship with momma. I bring the tablet in her room and we listen and I participate in the worship singing right their in her room with with her. That is a blessing.

I know that I will continue to have these “mental health” times. Times when it’s ok to slow down to question your purpose, progress and life feeling as thought you’re out in deep waters, but the point it not to stay there. You are to find your anchor, for me my faith, and allow that to guide you back to shore.