About kaiserswest

A wife and mother to 3 amazing sons, and grandma to 5 (and counting) beautiful grandchildren. We currently have my mom living with us, as she completes her Alzheimer’s journey. This is just a place where I can muse on things in my life and the world around me. I don't pretend to be a great writer or theologian, historian or blogger, but I'd love you to join me on this journey!

Christmas in August

When my mom arrived in Alaska last September, she came with just a little money, her suitcases (there were 9 of them!!) and her smile. But she had no assets. Which means she qualifies for assistance. She is a Medicare/Medicaid recipient. There are so many people out there calling for a reduction in the money spent by these programs, because there has been so much fraud, waste, and abuse. I totally get that, I really do. I worked in a welfare office and I understand how government payments work, how benefits are assessed, and how the application process works. I understand how cumbersome and ungainly governmental application processes can meander on, seemingly for months – I managed them through our clerical workers, having the approval/denial stamp in my hand. I saw so much abuse, uncovered countless cases of welfare fraud, and was so frustrated by the entire system, that I eventually quit working for the welfare department. So I came to the application process with our local Medicare/Medicaid offices, and the amazing advocates who work for our seniors and disabled citizens, with eyes wide open.

My mom is sinking ever more quickly into her rabbit hole of Alzheimer’s. She believes she is still the quick-thinking, very competent woman she has always been. But there is very little mom can actually do for herself. She can dress, but it is a long, long process. She can no longer discern color very well, and so choosing matching clothing is arduous for her. It exhausts her, so she prefers to just stay in her pjs all day. Mom is also not as steady on her feet, and seems to tip over easily, making dressing difficult. She has also started to shuffle her feet when she walks, and shoes are such an issue for us. (Thankfully I got rid of her heels and peep toes months ago). Mom no longer remembers to use soap or shampoo or toothpaste. She thinks getting wet means clean. She can remember her eyebrows! Which tickles me to no end. (Yesterday she had two on her right eyebrow! When she was trying to be serious, it was difficult not to giggle). She cannot cook. I asked her last night what dressing she wanted on the salads I had made for the two of us. She had no idea what the words meant, looking at me very confusedly, saying, “Just put one of them on there. I don’t care. I’ve been eating salads since long before you were born.” Not sure what that last statement had to do with anything, but I am learning it means she is lashing out because she is confused, it angers her, and she cannot verbalize it. Like I said, Alzheimer’s is a rabbit hole.

Part of the process of caregiving is, quite honestly, finding some help. Caring for an elderly family member with any of the dementing illnesses is probably the most stressful thing you will ever do. There is so much more going on than just caregiving. You enter this disease with your loved one; it is like you are both diagnosed. In my case, this is my mom. She and I hadn’t lived together since I was 21. And that, my friends, is 40 years (okay, a little more this year! LOL!). A lot of water under the bridge. So not only is learning to live with my mom again rough, I also have family members adapting in the same house, too. And to top it off, mom has end-stage Alzheimer’s – that in and of itself is difficult. Now add the family dynamics at play. And some days, if I get dressed and everyone is fed, we have had a good day. Some days, meals are on the fly and I am still in my jammies, having followed the journey of my mom all day long. There are days when, if she cannot see me every minute, she goes into full panic mode. Last night, as I was helping her dress for bed, she commented about wanting to go to the beach or some place she was familiar with from years ago. (During the afternoon, she spoke about me going with her to her cousin’s farm in New Zealand. I have never been to NZ). And when I told her she lived in Alaska, she asked me where that was. I cringed inside, and told her it was a place where she could wear flannel pjs all year round, and still have her electric blanket set as high as it can go, in August. And as I turned out her light and shut the door, I barely made it to my own bed, completely exhausted. Mom had been so cranky all afternoon, treating me pretty poorly. But I knew it was fall out from our afternoon meeting, where we were putting together a “plan of care” for her. And she was not happy about it.

We applied for all the programs we could get. Some we did not get. Some we did. Some ran out before we could fully use them. But one thing I became aware of, is that our government has a lot available for our seniors and our disabled. We just need to plug into it. I completely and fiercely believe that those who are entitled to assistance should not be denied the assistance. Mom has paid into the system for the past 65 years. And I think she is entitled to the help, now that she really needs it. I also just as fiercely believe those who abuse the system should be punished, leaving more for those who qualify and need it. I am not justifying, just explaining. Mom qualifies for assistance in the home and I am beyond thrilled. I feel blessed. I am exhausted. Mentally, emotionally, and physically. I am finally getting some help. Family helps, don’t get me wrong, but even when they help, no one is getting a break. Mom does not remember we had breakfast today. She does not know where she is, what day it is, or what she is looking at. I put on programs thinking she will like them, and she promptly falls asleep. She does not respond to me when we are trying to accomplish daily tasks, and will put on her mom hat when I am trying to cajole her into bathing or dressing or toileting. But she shows off for strangers. She proved that the day we had her State assessment. She literally jumped onto her bed and posed in a very provocative way, to prove she was able. Most nights she requires my assistance to get herself into bed. Ha-Ha. She is quite the social person! Her physicality is strong, but she is very low functioning, cognitively. (She pretty much failed the cognitive portion of her State assessment). And so we planned for her care yesterday. And she fought us. She does not want a stranger around her. She was pissed off the entire day. But, we all need the assistance. I need the assistance. My family needs a break; my family needs me! My friends miss me. I miss me. And I think this will help energize mom in ways she does not realize she needs. One of the things we are scheduling is the “Memory Cafe.” It is a place she can go where she can hear music she knows, and talk to people her age. She previously said she doesn’t want to be with old people, but lately she has said our life is so quiet at home and that she would like to get out more and talk to people her age. We are hopeful the Memory Cafe will help. She will be able to have her caregiver (which will no longer be me) take her for mani/pedis or haircuts; out to lunch and shopping; to senior center programs and other activities she may desire to be a part of.

This journey is fraught with tension and fear, and daily doses of frustration. And now, with this much needed assistance coming our way, some of that frustration will ease off for me. There will always be fear. Mom had a rough day yesterday and she was exhausted. The fear of change is hovering over her and I think she knows change is coming, and so she is tense and rather testy. And underneath all her gruffness, of which I am fully aware, is an old woman afraid of things she does not understand. She could not follow our conversation at the table during our Plan of Care meeting, and even though the wonderful advocates who fight hard for mom tried to include her, she sort of dug in her heels and said she didn’t want it. Thank goodness I was counseled to put things in place earlier, so the final decision for her care is mine. But I really believe this is for her best. And I know it is for my best. And I am praying she will adapt and be happy. She will get someone dedicated to her care alone. And she will get out into the community. And we will enhance her assistance as she falls deeper into this ugly, ugly disease. Having this plan in place allows for a further dive into Alzheimer’s. The program is encompassing and very full. There has been thought put into caring for our disabled and elderly.  And I am ready for mom’s life to be made better through the assistance she will receive. We all feel surprised and excited at how truly full this program is, and blessed mom was approved. So, for me and the family, it truly is like Christmas in August!! Maybe I will make cookies….

 

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“My bearings are rusted.”

Oh mom. With a full heart, I sit here and watch you as you sleep. You seem to sleep most of the day away. And you will awaken, and get your bearings. You always check your watch. You don’t think it is working properly because the day sneaks away, as you sleep. Most of your waking hours, you seem so lost. You have spent so much time being angry, and lashing out. Maybe it is because you knew this was coming. That you would enter this stage of a disease that steals you from me, one heartbeat at a time.

I realized our days of shopping, getting coffee and a snack, laughing and being grown women together are over. I wasn’t quite ready. I thought there was a lot more time. I don’t mind caring for you. It is my way of thanking you for the years you cared for me. All the times I was throwing up and you would stroke my forehead, speaking nonsensical mom-isms to me, giving me comfort. The many nights you spent caring for me over fevers and infections – there were so many years dealing with all my sinus issues until we finally, surgically, dealt with them. So many hospital stays and worries over surgeries. You never left my side. You were a difficult mom to grow up with, because you never really were the cuddly, climb-on-your-lap, type of mom. You were not really domestically inclined. But you loved your kids with all you were.

This past weekend, you were only awake for a little more than 4 hours in a day. And you are so confused. You keep thinking when you wake up that it is morning. You sigh a lot. Your shoulders hurt. The Icy Hot is right next to you, but you just cannot see it for some reason. And as you look at me, you smile. And it warms my heart. And it just kills me, too. Because some of the times you do look at me, you don’t see me. I’m not sure who you think you are looking at, but I know in my heart it is not me.

So often you mention your grandparents. You spend most of your days as a little girl, I think. We were watching this movie and you turned to me and said, “When I was a kid, we had a motorcycle.” There were no motorcycles in the movie. There was nothing remotely connected to motorcycles, but it was important for you to share. On another occasion, you were laughing during a particularly gruesome part in a Bourne movie. And I know it was just because you had woken and were still getting your bearings. I even mentioned it to you, as you tried to stand and were all wobbly. You said, “I think my bearings are rusted.” Yeah; rusted. Unfortunately, the rusting is taking place in your brain and I really hurt inside that I cannot help you. I can assist you, but I cannot make this better or make it go away.

Each time we venture into public, I watch you struggle. Today as we walked the Target aisles, you were walking sort of sideways. You were having a hard time maneuvering through the aisles and there was just too much to take in. Too much visual, emotional, and auditory stimulation. We came home and you have had a hard time staying awake. It is like our world is contracting as this disease takes more and more of you away from me. And I can’t stop it.

Alzheimer’s steals those we love from us, one brain cell at a time. It is relentless and non-discriminatory – it chooses whomever it wants. There are all sorts of theories about prevention, but there is no cure. No cure in time for my mom. Hopefully, by the time my kids are elders, there will be no Alzheimer’s. Because I do not want to fade away in front of my children the way my mom is fading in front of me. I understand now, why so many people say, “I can’t be around her (him) because I want to remember them the way they were.” And one of the saddest parts about that statement, is because you stay away, you are no longer in their minds or memories. And it is lose-lose, all the way around.

Tonight my mom told me again that I am her best friend. She hugged my neck. When she was forgetful about what we were discussing, I told her it was okay and that she did not need to fake a memory she did not have. I told her that is what she has me for. Her reply? “Oh my darling daughter, I need you for far more than memories. You are my love and I am so blessed you are my daughter. I love you.” And that makes every ugly moment worth it.

 

August 2017

 

 

“Here I am, Lord. Is it I Lord ?”

Alzheimer’s is such a weird journey. It is so convoluted and each person’s experience is so very different. I am involved with several groups and I see photos and read comments from family members who care for their loved ones. Some have them in special facilities, others have them at home with them, and still others are trying to help from afar. In any of these scenarios, the experience is pretty much a unique one. But the thread of Alzheimer’s runs through them all. I keep looking for markers and “points of no return” with mom. And when I see them, I inwardly cringe and outwardly square my shoulders and jump back into the ring to continue to fight this Alzheimer’s thing.

I like growing flowers. I am learning so much about which ones grow in our northern climate, and which ones over-winter well. And then there are those that the box-stores sell that most of us who are gardening laugh at, because they will not last up here. Spring and summers are capricious. Some days are hot and some days the winds howl and the rains pour down. Most box store plants don’t make it. The ones I have planted bring me such peace. The colors are vibrant and the plants are hearty. And I usually just sigh and smile when a new flower opens. It is pretty addicting. And it is pretty much the opposite of watching a loved one lose their battle with Alzheimer’s.

This past month we have seen incredible changes in my mom. My mom is no longer on any of her previous medications, other than her anti-depressant. She gets Tylenol several times throughout the day, to help with her arthritis pain (along with liberal use of Icy Hot on specific joints), and a daily multi-vitamin. That is it. No long list of medications. Her doctor feels that exposing her body and internal organs to the chemicals in her medications was not worth any of their benefits, and that they were not doing much to increase her longevity or quality of life.

This past week, mom was evaluated for her Medicaid Waiver. I was so stressed for her, that I spent the day prior doing power cleaning. The house was spotless. LOL. And I informed mom the night before that this team was coming, and it just pissed her off no end. She did not understand that getting the Waiver is a good thing…for all of us. The next morning, the morning of the interview, mom could care less. It was hard to get her moving and she was being so nasty to me. Then the team starts arriving and mom comes out all smiling and hugging and “It’s so good to see you again. I have missed you” to people she has never met before, trying to fake her way through things. LOL. She really put on a show. Being all independent and capable. I was so worried she was fooling them. And I was quietly praying the entire 2 hours they were here. Afterwards, the people who are part of our support team went outside and chatted with the assessor and then came back inside. (Mom was watching TV, oblivious to the entire process by this point). They told me that the assessor saw through mom’s posing and pretense, and that we should be getting all the assistance she is needing. I just stood there and cried. Okay, I held it together pretty well, although I did get a supportive hug from one of our team, but I fell apart after everyone had left (I went into my closet, sadly, to hide from mom and be able to cry and have her not hear me). I am strong on the outside and everyone tells me what a great job I am doing, but on the inside I am crumbling. My mom is dying. In front of me. And she is not going quietly or simply. She is fighting for every moment. And I am so very tired. Emotionally tired, and some days, physically beat up from all she puts me through on a daily basis. Sigh.

One of the things that a team member told me was that Alzheimer’s is a degenerative disease (which we all realize and know). However, what we see, and experience, with our loved one is just a part of the effects this disease has on people. If we see a sharp decline in their cognitive functions, we need to realize their bodies are declining on the inside, as well. The decline is in common functions like breathing, as well as walking and talking, abilities to eat and, to even swallow. Alzheimer’s disease is a degenerative brain disease, killing brain cells as it progresses. And you do not recover from it. Once dead, brain cells do not regenerate. Ever. Eventually the cells that control the heart, the lungs, and the organs, also fail. And now that her cognitive decline is speeding up, other things are starting to fail – her strength is poor, and her sense of balance is off. She actually fell onto the lap of my son’s girlfriend the other night, while trying to stand up from the couch. Some days she walks into walls, missing the corners of the hallway. She gets lost going to the bathroom, walking into the mud room or laundry room, mistaking it for the bathroom. Some meals I serve, she just cannot eat and will hide it from me, saying it was so tasty. She doesn’t realize that I wash all the dishes and I see what she covers up. LOL. She is preferring things like milkshakes over most other foods. So we are changing meal plans to accommodate her decreasing ability to consume foods.

On the other side of this, I think I don’t have it that bad. LOL. Strangely enough. I see articles and photos of people struggling with Alzheimer’s who cannot walk on their own, breathe without oxygen, or who cannot get out of bed. Mom still puts on her earrings and her White Shoulders perfume, along with lipstick, before she says good morning to us. She can barely see her watch and is constantly thinking it is wrong, because she sleeps for hours and hours during the day and has no idea where the day has gone. I have to scrub the bathroom more than once daily (my hands are baby soft from all the scrubbing) because she has no concept of the mess she is making, but it is still not as bad as some have it. Mom looks good; she is always concerned with what she wears and works so hard to match colors she can no longer recognize. She worries about looking good over almost everything else. And to the point that she spends hours upon hours (I am not exaggerating) putting on her make up, especially those dang eyebrows (which she now draws on her forehead, thinking since her eyebrows are white and sparse, she can put them where she thinks they should go. I am not making this up. She told me this herself!!). She is present and trying. The sad part is that she has no idea how she is presenting herself, and I know if she did not have this disease, she would be mortified.

And now we are preparing for her inevitable end. And I keep thinking, “It’s not that bad. She is still walking around, talking, eating. Really? Are they sure?” And then I really look and the decline is so viewable. She is not making sense of things. She is disjointed and her conversations nonsensical. She is comfortable sleeping in her jammies all day on the couch. She has no urges to get off that couch, or out of her particular space on it! I cracked up, when she decided to get dressed for dinner the other day, as I was plating the food and setting it down. I had to go find her and tell her dinner was ready. She was so upset she was still in PJs but then when I told her it was just the three of us (my hubby, mom, and me) she relaxed with, “Well, so long as no one is dropping by.” It was after 6pm. LOL.

And as she bangs into the wall, or wears more of her food than she eats, or laughs at horrible photos of earthquakes in Indonesia, I realize that I am here. My home has become a nursing home and mission field, all combined into caring for my mom. I am here for her, helping her through these last stages. I am blessed to have my mom trust me to be there for her. She still hugs my neck at night and tells me she could not do this without me, and then says, “God bless you.” And most nights, it makes me smile, and occasionally brings me to tears. Because one night very soon, it will be the last time she ever does that.

 

Here I am Lord by Dan Schutte

I, the Lord of sea and sky,
I have heard My people cry.
All who dwell in dark and sin,
My hand will save.
I who made the stars of night,
I will make their darkness bright.
Who will bear My light to them?
Whom shall I send?

Here I am Lord,
Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

I, the Lord of snow and rain,
I have born my peoples pain.
I have wept for love of them,
They turn away.
I will break their hearts of stone,
Give them hearts for love alone.
I will speak My word to them,
Whom shall I send?

Here I am Lord, Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

I, the Lord of wind and flame,
I will tend the poor and lame.
I will set a feast for them,
My hand will save.
Finest bread I will provide,
Till their hearts be satisfied.
I will give My life to them,
Whom shall I send?

Here I am Lord, Is it I Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

“..giving joyful thanks…”

We have had an interesting few days. We have been weaning Mom off all her medications. And what is sort of weird is that the hard edge she had developed is slowly withering away. She is becoming so feeble. She is having a hard time walking. She has a hard time toileting, or eating, or dressing. She leaves a mess wherever she is. The dog follows behind her, collecting the crumbs. But the expectations to this process were totally not met. I had been expecting this angry, horrible person to emerge from the medication fog. Instead, this little, old lady is emerging.

We attended a local baseball game last night. Mom dressed herself. I did not interfere. She chose her outfit and did her hair and make-up (she never forgets make-up, whereas I gave it up decades ago – HaHaHa). She had to climb up into bleachers – which thankfully had backed benches – and find her seat. She ate a hot dog. She watched her great-grandchildren play under and around the bleachers, as kids do. She commented about the pitcher (“He looks so thin. I think his mother needs to feed him more.”) and commented about the very active sky (“Oh, look at the clouds. I always think of my grandfather when I see clouds.”) and then would retreat into her mind. But she sat and enjoyed the entire game with us, never asking to leave. At one point, she did say she was cold and I laid a jacket across her knees, which helped a lot.

Today, I cannot seem to get mom moving. She is sleeping a lot. And I realize that pretty much everything takes energy. And she does not have a lot of energy. The other day, it took 4 hours for her to get dressed and ready to leave the house. Today, her energy is taken up by sleeping, occasionally talking to me, or staring at the TV. She just doesn’t have extra energy right now, to get dressed. But she is not angry. She is soft-spoken and kind. She is making a mess of the bathroom and she is going into the bathroom quite a lot, but she is happy.

The act of dressing, riding in a car, walking into this sports venue, sitting through a game, walking back to the car, and getting ready for bed took its toll on her. She has nothing left. And she said something interesting to me last night. She said, “I hate that I can’t do.” When I asked what she meant she said, “I can’t just go and do the things I need to do. It takes me forever to turn down the bed, get my pjs on, and get into bed. I never thought that as I aged I would not be able to do, whatever it was I needed to do.” And I thought about that. In fact, I am still thinking about it. Because mom has a very long list of what she cannot do; common things we all do, she no longer can do. And it grates on her. She hates being dependent on anyone, especially her daughter. Somewhere in that Alzheimer’s World of hers, she knows Alzheimer’s has things turned on their ear and she is frustrated with it. She tries to fix it when she has made a mess. She hides things. She wipes things but only makes it worse. But in her mind she is fixing it. She is taking care of things just as she has always been able to do. And the problem is the disconnect – the one between the reality is of what she is doing, and what she is doing in her mind.

“Whatever you do, work at it with all your heart, as working for the Lord, not human masters.” Colossians 3:23

So this kind, lovely woman fooled me for a few days. It was nice. I had sort of been relaxing my walls of protection, putting my dread and stress on a back-burner. LOL. Well, once again, she had her personality rear its ugly head, all without barriers or societal constraints. I was hoping this transition would be painless, as it has been, for more than a week. LOL. Silly me. She found her energy at 1:30 this afternoon, after napping the entire morning away. As she is making her way through the house, opening and closing closets, she is so confused. I asked her what she was doing and she told me she was looking for something to wear. She was in the closet with her 24+ cardigan sweaters (not kidding; I counted them) and I asked her what she needed in there. She said she was looking for clothes to wear, all exasperated because she had already told me that. I told her we were not leaving the house today and she did not have to worry about a sweater (it is currently cloudy and drizzling in July, so she thinks it is winter). She replied with, “Well, you may not be going anywhere, but I can go anywhere I want to. I can go out if I want to.” On her bed were all her shoes, a dressy pair of slacks, and 2-3 tops. I walked away. Sigh.

Alzheimer’s affects everyone around the person who has it. I cannot ignore her for long, because it usually means there is a mess I get to clean up. She gets confused about where she is in the house, going into the laundry room looking for the bathroom. She cannot lift the coffee pot to make herself a cup of coffee; she cannot hold a knife to butter a slice of bread. She has not cooked or done her own laundry in over 6 years. And even though she may ask if she can help, she rarely does. There is always an excuse why she cannot help (my hands hurt; my shoulder hurts; I feel light-headed).

One of the tricks they do in Alzheimer’s homes is they give someone a load of hand towels to fold, asking for their help. The person feels useful. They fold the towels and the nurse/caregiver takes the basket away, thanking them. About 10 minutes later, there is the same basket with the same towels (which they have sometimes fluffed into a mess, or run through a dryer) given to the patient, asking for their help. And they happily fold away. Same towels. Same basket. Over and over all day long. I laugh when people suggest this. Mom does not fold. LOL. Others have suggested a “busy quilt” or a “picker’s quilt.” Same thing. She would never go for a quilt that looks like a child’s toy. When I introduced mom to her stuffed animals, the idea was abhorrent to her. She said, “I am not a child. I am a grown woman. No thank you.” She now naps and sleeps with them. I wish I could get her to use a “busy quilt,” but she got mad when I tried to give her several items that are sold for adults, for the workplace. A couple of them were mine, when I was working. She actually got angry at me. I have no idea what to do, to keep her occupied. It is a rough thing to even contemplate. LOL. Her personality prohibits so much; sadly.

She woke from a nap with her two stuffed animals. She is back in the same closets. She has clothes everywhere. She was laughing and I went to her and she said the particular pair of pants she was holding were far too large for her, and needed to be hemmed, at the very least. Even though she has been wearing them for months. She proceeded to read me the size label, thinking she could not possibly wear that size. Then she begins to tell me that she has to get dressed to go out. I remarked that we were not going anywhere. She points to the living room and says, “Well, out there!” And I told her it was almost 2:30pm and she had been “out there” since 7am. She looked at me with so much anger and, well, a look I knew from being her daughter, and I just walked out of the room. When she has that face, even prior to Alzheimer’s, we all would know talking did no good at that point. With Alzheimer’s, it is even more enhanced. And much worse. Oh, and it is 3:30pmm and she is still not “out there.”

So I am sitting in the living room. I have chased mom all day. I am dressed. My bed is made. Teeth are brushed, hair is combed, and I have fed two meals today. But I feel like not one thing was accomplished. Sigh. The “round and round, here we go again,” of caregiving for an Alzheimer’s loved one. And I keep saying to myself, “Whatever you do, work at it with all your heart…” I am trying. I really am. *Bangs head against same wall* And so I pray for endurance, patience, and joy in serving. Sigh. Some days it is harder than others!!

“…so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God,  being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light.  For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.” Colossians 1: 10-14

“… a day is like a thousand years…”

You know, progression is progression. It is movement. Getting from A to B. From the beginning to the end. Our lives are ones of progression. From birth to death. We make progress in so many things, in all areas of our lives, at our own rate. Some seem born “an old soul” and some are the “eternal teenager.” I like to joke that many grow older, only a few also grow wiser. Ha-Ha.

The doctor told me that my Mom was progressing in this experience of Alzheimer’s. And that she is. The rate of progression is what is flooring me. Once she said Mom was progressing, it seems like it has sped up. I am not sure if it is because it was brought to my attention, or if things are speeding up. I noticed how little Mom is able to function in public when we had to deal with her dog bite, the stitches, and working with an OT to come up with something Mom would not take off, so her skin could heal. She could not recall she had been bitten, had stitches, or who this guy was, coming in and out of the room like he knew her! LOL. It was interesting, because my husband was with me and got to see it, too. So I know I was not exaggerating or making things up in my head. She had no concept of what was going on, but would give pithy comments, trying to make people laugh and forget she was clueless. Mom is what they call a very “social” Alzheimer’s patient. She can fool people pretty much all the time in public places. But once you sit with her for a couple of minutes, you know there is a problem.

And today, it became so obvious. Mom is having trouble determining color. She thinks blue, black, brown, purple, forest green…you get it…the darker colors, are all black. Helping her choose clothing is becoming quite the production. Sigh. She had a proper temper tantrum today. She had chosen some adorable summer capris a few months ago, but now she will not wear them because they are not long enough, and she says it is not summer. Today she saw clouds. So in her mind, clouds = rain = cold. So, her outfit ended up being long, black pants, knee-high trouser socks, undershirt, long sleeved blouse, a cardigan sweater just in case, and open-toed shoes (Yeah, with socks). Now, I am not sure if you know this or not, but we live in Alaska. There is an ongoing debate about how hot it is in the summertime for us, compared to some of the Lower 48 states. Suffice it to say, 75 is a hot day. Just trust me. It was a capri and flip-flop day, complete with the A/C in the car. But not for Mom. The decision-making took over 45 minutes. But I learned which clothes I can get rid of, and which ones we keep. Her closet is shrinking. So that is sort of a win-win. Mom got to wear her black slacks, and I know which clothes I can toss.

And then we had to shower. Since she has lived with us, each time she showers all I hear about is how she always (she speaks in superlatives and I have learned to let it go…well, I am learning to let it go) had showers with a hand-held shower head. We finally got one when we got her incontinence supplies and my wonderful husband installed it this weekend. My walls were soaked. The floor was soaked. I was soaked. The bathmat could seriously not hold another drop of water. Mom had no idea how to use this device. I learned quickly that I will be the one using it. Honestly, the only thing she used it for was to rinse herself, especially the nether regions. I had to remind her to use soap. And shampoo. And each time I spoke to her, she would turn and spray the water in the direction she was facing. I finally took it from her (telling her I would help her rinse off) and directed the process.

And then it was time to put on her make up. I have come to realize the brows are so dark and exaggerated in part because she cannot see very well, but also because who she sees in the mirror is about 65 years younger than she really is. Regardless of what is going on in her head, and her hand as she applies all her powders, etc it is a process. The progression is very slow.

Finally, we were ready to leave. It was 4:00pm when we backed out of the garage. It had taken my Mom 4 hours to get ready to leave. This was a new Alzheimer’s World Record. And people like doctors and others laugh when I tell them 3pm is early for an appointment! They truly have no idea.

Our shopping spree to Mom’s favorite thrift shop in search of more appropriate clothing yielded 4 blouses and a pair of slacks. And it took 2-plus hours. She was exhausted. And funnily enough, so hot she asked me to put down the windows and had no objection when I finally closed them and blasted the A/C…it was 75-degrees and my car was boiling. But that was all for the day. The processes we had to go through to yield the new clothing had taken their toll, and she just could not function any longer. I drove through Panda Express and got her favorite String Bean Chicken (its mine, too) and we went home. It took her over 2 hours to eat. She was just so tired. It is now 10:30pm and she is finally in bed. And I am wide awake, musing over all of this day, and how truly far she has progressed in such a short time. I am stunned, actually. She said she just wanted to be home. Usually, she loves to shop. Loves interacting with people. Not today. Not today. And maybe not tomorrow. It is our new reality. I am struggling with it.

“But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day.” 2 Peter 3:8

There is a time for everything, and a season for every activity under the heavens.” Ecclesiastes 3:1

“Count it all joy…”

This week has been an emotional one. My mom had her stitches out – yay. And that was on her right hand. This week, she tore the skin off her left hand. Sigh. Doctor put on steri-strips and a dressing. On top of that, we have her wear a pressure glove. This morning, out she walks in full make-up and perfume – no glove. No bandages at all. Has no idea where they are. Nor did she know why we needed her to keep the glove on. I had to go on a treasure hunt. Found some of the bandaging. None of the steri-strips. Found the glove inside the closet. The tape was on her dresser. She had hidden things around her room. And she had no clue she had done it.

This week we had an appointment with her primary care doctor. And because we are so blessed in all of this, her doctor happens to be a gerontologist. She totally gets all of this. And this week, we were blessed with a 2.5 hour appointment with this wonderful doctor. She was able to analyze mom pretty quickly this visit. We have not seen her in about 6 weeks. The decline was noticeable and measurable. Mom could not converse, nor could she answer any memory questions. None of them. The doctor looked at me, turned her chair, and said, “From here on out, I talk to you. I am so sorry.” And we chatted about mom and her marked decline, further down this rabbit hole of Alzheimer’s. The doctor has removed all her medication, in a pattern. Right away, her statin, vitamins, and Arricept were stopped. She replaced all that with a Flintstone vitamin in the morning and at night. Then she added Tylenol with every meal. Mom’s chief complaint is arthritic pain. Next week we stop her Namenda. If that goes well, we will be changing out her antidepressant for one that will help with inflammation. The doctor told me mom is entering the final phases of Alzheimer’s and at this point, the medication is no longer doing much for her. Statins are even sort of silly at this point. Sadly. And I realized, as we sat with the doctor, mom did not participate and did not even notice she was not participating.

One of the things the doctor suggested was buying mom a stuffed animal to hold. The one above is the one she chose. We walked into the store and right to the stuffed animal aisle. She was “oooing” and “ahhhing” over them. But once she saw this one, that was that. She cuddled it, told it she loved it, and carried it throughout the store. Now, if you knew my proper Kiwi (New Zealander) mother, you would know how out of character this is. The doctor said that as Alzheimer’s progresses, the person needs touch and comforting. Some women, who were very motherly in life, prefer to hold and carry dolls that look like newborn babies. Mom, not being the particularly motherly type, preferred this kitten over a babydoll. I sort of teased the doctor, thinking she was nuts. But mom adores this kitten. The night we brought it home, she arranged her kitten on her bed. When she went to bed, she made room for it on her pillow. Then she cuddled it. I asked her what she had named it. She looked at it and exclaimed, “It’s like she is just watching me. Oooo, I love her. I think I will name her, “Honeybun.” I kissed her goodnight and petted her kitten and told “Honeybun” goodnight. Her response was to sigh and speak quietly to the kitten as I closed her door.

My mom is slipping away so quickly. She moved in with us last Labor Day weekend. In that short amount of time, Mom has gone from a “stage 5:” to a “stage 7” – which is the final stages of this horrible disease. She is here. Very much so. But her abilities to participate in life have greatly diminished. She cannot follow a television commercial. She does not understand a half-hour comedy show. Her comments run the gamut from, “This show has been on for so many years,” to things like, “I think I know this person,” or “I love sports, because it is just there and you don’t have to figure it out (so telling, isn’t it??), to things that have never happened that she insists are historical fact. Sigh. She cannot figure out how to pour a cup of coffee and add cream to it. She cannot cut her own food (she claims it is because her arthritis is so bad). She cannot get dressed without supervision because she falls over. She can no longer match colors. She needs help bathing and toileting. She cannot plan her clothing, or her day. She has no idea when I say to chew the Flintstone vitamins that I mean to chew them like food and not swallow them like a pill. She says they are too hard to chew and she might break a tooth. When I told her they were children’s vitamins, she was insulted. But then she laughed and chewed it, saying they taste good. Ha-Ha.

Mom loves flowers, plants, animals…just finds the joy in nature. We went to a Peony farm where they let you pick the flowers for $1 each. They are so pretty. They taught us what to look for in a bud and how to ensure it would open up in a vase. Mom could not be bothered walking the farm or participating because it had drizzled just minutes before and even though it was 75-degrees and we were sweating, she said it was too cold to go outside. She waited in the car while my grandchildren, daughter-in-law, and I chose and cut peonies. I put the peonies on the table in an old vase of my mom’s, and waited for them to open. My youngest son’s girlfriend brought us a few more, and we added them to the vase. Mom thought they looked and smelled lovely. Then she noticed the cloth on the table. It is a map of New Zealand. Oh my word. Flowers were eclipsed. She cannot stop looking at this cloth, remarking on how she used to live there and wants to go back, but says, “Everyone I knew would be dead by now.” And she approaches it several times a day to actually smell the flowers (she has forgotten the tablecloth because it is sort of hard to see),and each time she is in shock over it, commenting with all the same sentences, down to the same inflection and tones – it is truly instant replay. And it brings her as much joy each time, too. It helps stimulate her memories, and it is so good to see.

To make mom happy, and to try and make her feel pampered, once a month we get her a mani-pedi. Well, I just don’t think this is going to be practical any longer. I talked with the doctor, telling her how I had gels put on her nails, trying to save them. But they keep peeling away and cracking, splitting from bottom to top. The doctor says it is because she plays with them too much. She told me to stop the gels, cut her nails short and to round them so they are not sharp against her very fragile skin. And if it makes her happier, put stickers or bright polish on them. She told me to use Vick’s VapoRub on her feet at night to help with nail health. But to keep everything simple. Keep her comfortable. Keep her fed and happy. And that is about all, from here on out.

When the doctor told me mom had reached this stage, I was rather shocked. I mean, I knew she had progressed, but not really how far. Its hard to put into words. I am sad. This is new territory. Alzheimer’s, and the other dementing illnesses, are rough – for all of us. So, we square our shoulders, and we move forward. We hold the hand of our Loved Ones, and we get through this. One moment at a time. One memory at a time.

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”     James 1: 2-4

“A good measure, pressed down…”

I haven’t written anything bloggy in awhile. Life has a way of interrupting. Ha-Ha.
“To everything there is a season.” When you read the Scriptures they prepare you for life. They really do. It always seems like the ones I need to read somehow come to my attention. And I then go to the Bible and read the entire verse, so I am sure I get the fullest meaning I can, and then am able to apply it better to my life.

And I have been contemplating life. I have been so stressed out. Not sleeping. Stomach churning. I had thought my life would ease up a bit as I got into my sixties. But it seems like it has only pressed down and become more concentrated. Certainly not an empty nest or decreased responsibilities. Ha-Ha. Nope. Not at all.

And trying to think, all these verses come springing into my head. I am looking for blessings being poured into my lap. Oh I do! But instead, I am picturing God, sitting up there, watching me and thinking, “She needs more work. She needs to be pressed down a little more. She needs more refining.” And He’s laughing. And sending me experiences that test my knowledge, faith, state of mind, creativity, and love. I have been seeing myself get pretty down. So I have tried to giggle through these experiences. Some days it works; some nights it does not.

I have always loved that painting above, by Thomas Blackshear. It helps me when I feel like I have tripped and fallen again. And when I am facing things that hurt, or are causing me to be depressed. It comforts me because even though the young man is holding the nails and the hammer, Christ is forgiving him and holding him up. We all do things that hammer those nails into Christ. Sometimes we fall short of who we know we can be. Sometimes we ignore the right thing and do the convenient, easier thing. Sometimes we ignore our faith for the world. The Lord knows all of it, and He is still holding us.

This past week has been eventful and stressful. My mom was bitten by a dog we were hoping to foster. We spent hours upon hours at Urgent Care. When a person with Alzheimer’s gets an injury, it changes the entire world. For them, and for those who care for them. It took so long at Urgent Care because mom kept touching the wound after they had sanitized it, not realizing what it was. She did not understand what had happened, nor why she was where she was (which was an operating room). She kept insisting in putting a bandaid on it and just leaving. We finally were able to get her to leave it alone long enough for the PA to stitch it back together. Within the hour, and while still in the car on the way home, she had torn through a stitch. The PA had asked me if she was on blood thinners, because she was just bleeding so much (she is not). Her skin is so fragile, the stitches are stronger than her skin and when she moves, the stitches stay put and the skin moves, pulling away from the stitches. The bleeding is pretty extensive. And she keeps forgetting she is injured, how she is injured, and where she is injured. We had to re-visit Urgent Care and were able to work with an Occupational Therapist who devised a glove/brace so we could immobilize the area, allowing the skin to knit and heal, and to keep unwanted bacteria out of the wound. This morning the brace was missing and when I located it and tried to put it back on, she asked me if she had broken her arm. No recall of the past few days. At the OT, it became apparent her short term memory is now at about 1 minute and with my husband there as well, it helped me realize how quickly and how much this has progressed. Sadly, we have realized she has absolutely no recall. I have had to remind her every couple of minutes that she cannot move her hand, and that, “Yes, she has stitches,” and that she can “take it off in another week.” Every couple of minutes, all day long. I am tired. And this stress headache is becoming an old friend.

It is amazing to me how quickly this has happened! Just a few months ago we were doing facials, shopping, having lunch. Now she cannot remember what I said a moment ago. And I have been so-so-so worried about this wound. Keeping it clean. Not allowing more bacteria into her world. UTIs are a way of life with Alzheimer’s and two in two months is two too many! And so I am not sleeping. Not eating right. Having panic attacks. Because Alzheimer’s is getting very, very real and very, very quickly, very real. And I am sad. And I am scared.

I am already missing my mom. We can no longer carry on fruitful conversations. We cannot even comment on the weather, because she gets confused. Having so many hours of daylight here in Alaska is also messing with her head. Getting her to bed some nights is almost impossible. Getting a good night’s sleep, for me, is becoming more and more rare. I am emotionally fried, and pretty tired. And mom is becoming more and more immeshed in her world, which is about 1953-ish. When I remember that, our chats are easier! Today, she looked at me with clear eyes and said, “I can’t believe how much I can’t remember” and smacked her head with the new brace.

Alzheimer’s – this dang terminal, degenerative brain disease – is a lose-lose disease. Mom loses her life, and I lose my mom. I have spent most of my adult life living in a different town from my parents. My mom has always been a prickly person. Sharp tongued and stubborn. Not an easy woman to live with. But when she is gentle and kind, you know you are so very loved. She was the best mom when we needed that. She could comfort like no one else. And I know deeply in her heart, she lives for her kids and grandkids. And having to go on in life without that in my life? Well, I had not given it much thought. Today, it is all I can think about. My loss. My pain. And how I mismanage this journey so many moments, of so many days. Thankful my God is behind me and holding me up, even when I am undeserving. Because His love is unconditional. And I am learning that my love for my mom is becoming a better reflection of that. Because this disease is becoming more of a reality the worse it becomes. And the less my mom becomes, the more I need to be. I am tired. But I can do this. We are all called to care for our elderly and infirm. It truly is the very least we can do.