“..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.