The start of something blog

Welcome to this online site for people to keep up with Lynne and her long journey with Alzheimer's. It is our journey as a family, since Lynne cannot take any journey alone anymore.

Lynne was diagnosed with early onset Alzheimer's disease in early 2016. We knew in August 2015 that she had memory problems.  We made a family trip to Pennsylvania for Jean's 55th birthday. One of us had to keep up with Lynne in the airport.  She could not be left alone in the bathroom or in the line for food. 

Alzheimer's is a thief. It has robbed us of our sweet Lynne. It has robbed me of my sister and friend. There are so many aspects to this disease that I did not know until Lynne's diagnosis; for example paranoia. Lynne would think the autocorrect on her phone was an enemy messaging her. Lynne is also diagnosed with PBA (pseudo-bulbar affect) which means her emotions are not congruent with the situation. She has a sweet doggy, Sassy, that is very protective of her. Lynne has lived with us for over two years now, she could no longer live alone or work. Lynne goes to adult daycare five days a week and that has been her social outlet. 

We, as a family, have worked to give Lynne a safe place. We worked so hard to give her a private space. She is surrounded by her art collection. The plan is good. It is just that the illness will not follow the plan. There is always the thought I could do better or do something different, but that is not always the truth. There is nothing to do different and the plan is the best plan.

Lynne is a theatre major. It had been a long-term goal to get her to a broadway show. Logistically, I could not take her to New York. Broadway came to Atlanta, Wicked, at the Fox. Molly made our trip reality. We were all our old selves during the show.

I did what I felt God asked me to do. Lynne may never say thank you. I do it with joy, not happiness; for my joy is in the Lord. I go to bed at night thinking, knowing I did the best for her, and that matters.

Saturday December 21, Winter Solstice

A good day so far. I woke Lynne up with a mug of peppermint mocha. It is still hard for me to give her single action commands.  I still try to let her make choices, but it frustrates us both. She though she had to put on her shoes before she took the mug of coffee.  So she was holding the shoes in one hand and taking the mug in the other and of course it was too hot. So, I had to tell her to put her shoes down and take the mug with two hands. Something so simple to me, but complicated when Lynne is in the mix.  She wore her jeans and slept in them for a week.  It really was too much to force her to change her clothes, so I bought her another pair of jeans and swapped them out. Yes! Score one for the caretaker.

The plan is a moving target. It is work.  Sometimes I feel like I am chasing the target. I have to remember simple yet oh so important goals.  Lynne is safe and for today that is enough.

Well, I spoke too soon. It is Saturday night. I have Lynne shower, shampoo, and blow dry her hair. It has become increasingly difficult to get these three steps completed. I tell Lynne what to do. I feel bad because I tell her what to do.  I checked on her every fifteen minutes to see her progress.  Each time she told me she would shower and got up and went toward the bathroom.  After the third time, I went on with my sewing/quilting.  It just did not seem that important to get upset about a shower. I am upset, but I don't want Lynne to be upset that she cannot follow simple commands.  It is so hard to say to myself..."tomorrow is another day." Molly comes home after midnight.  I tell her I have no idea if Lynne showered or not. Molly says..."oh well." So, I will try again tomorrow. 

Sunday December 22

I know Lynne will not recall if she took a shower or not.  This means no church and no afterchurch events, because I could not get Lynne to shower. Tears from me this morning, because  I have to draw a line. I am not bathing and dressing Lynne. I would be mortified and if Lynne did not have Alzheimer's, she would be mortified. So, the plan is to try again today. "Every morning, I ask the Lord for strength to face whatever comes my way (Alzheimer's caretaker paraphrase of Luke 1:37)

Lynne woke up at 1pm.  I started encouraging to take a shower and shampoo her hair. She was blowdrying her hair at 3pm. Whew! Thinking Starbucks for reward.

930-1030 lights out. It is Sunday night and I tell Lynne she has Ruth Byck in the morning. I fall asleep in the chair. 2am I wake up, go to bathroom and Lynne's bedroom light is on and she is coloring.  "Lynne it is 2 am-you've been supposed to be asleep." Then she says "right, right, right,", but gets frustrated when I tell her to put on nightgown. I'm thinking I don't want a repeat of last week when she slept in her clothes. It takes three times, me telling her to take off her clothes and put on her nightgown and take off her glasses.  "Why do I have to take off my glasses?" "...because that is what you do when you go to bed.

Monday December 23

It is raining.  Lynne gets up easily at 7, dresses and finds her bag and rain jacket. When the time comes to leave for the bus-she cannot put her hood on. I don't help her because I won't be here to help.  She does not know what a hood is or that it is attached to her collar.  Bus honking.  I tell her to go. I miss my sister.  She is here-but she is not. St. Benedict...'always we begin again'. "His mercies are new each morning" (Lamentations 3:23). 

Christmas Eve 2019

I awake to Lynne fully dressed and staring at me from corner rocking chair at 630am. "Lenny, bus does not come for another hour." Lynne: so I should just lay back down? Kay: No, just go in your room to watch tv.  And she did....until she came back for cat food. 

Well, I had cancelled Lynne's transport home, but she was still on manifest.  When we got to Ruth Byck, no Lynne.  We were due at Outback at 4pm for feast with Helmley/Bonifacio clan.  No surprise to God that Molly did not want to come to Outback, but was planning on coming to church.  She met Lynne when she got off bus and they met us at church.  After church we went to party at Paskauskus home.  We all take appetizers.  Molly helped Lynne get her first plate.  I'm not eating-full from Outback. Lynne wanted more food.  I asked Regina to look out for her to make sure she did not double dip and Regina said I called it and double dipping averted.  

9pm my hubby turns into a pumpkin so we go home to open presents.  We all get jammies.  Lynne gets HP with mischief managed on shirt.  We all take pictures.  Molly has a onesie-she looks like an elf.  Dale has grinch and I have what would have been Joe's shirt if he had come,Yoda, Elf I am not.  We sleep in Christmas day but go to Bonifacio's at noon.  They made special effort and gave Lynne gifts.  She was happy.

December 31, 2019 Tuesday, the last day of the year.  Just like any other morning I wake Lynne at 7am.  She gets up to get ready.  I tell her I have a doctor appointment and I will call her, which I do.  She is still in her nightgown.  I tell her she needs a shirt.  She is gone for awhile and comes back in her nightgown.  Lynne you need a shirt.  Take off your nightgown and put on a shirt. You need to get ready for Ruth Byck.  She goes and comes back in her nightgown, but this time she says she does not want to go.  She doesn't feel well or feel like it.  I tell her she feels fine.  She says I don't know her and walks off. Right, I've only known her my whole life.  Then I sound like the Family Guy kid...Lynne...Lynne...Lynnee...Leonard...She comes back and says Idon't want to go. I don't want to go. I don't want to go. Well, I'm driving and illegally holding my phone using any and every thing I can think of to cajole her into getting dressed before the van comes. Then the call from Transport.  I tell them I cannot get her to get dressed. They cancel both trips. I call Ruth Byck and talk to Tamika, she said Lynne has been off at the center too, not her usual self.  Now at 830pm, she has been in bed all day, no food, only water with her pills. I have not idea what to do. 

January 1, 2020 

I wake up with resolve and determination to get Lynne out of bed, dressed and fed.  8am we start. I give her am meds. I sit on the bed and tell her I cannot do this without her.  I need her help. Thirty minutes later we are going out the door.  I tell her again, I cannot do this without her.  I need her cooperation. She said okay. The reality is that she will need to go somewhere, a locked facility, if she cannot get dressed and get on the bus to Ruth Byck.  I plan to put out her clothes. Plant the seed in her brain the night before. We go to McD's and get sausage Mcmuffins, 2 for 2$, then go to Starbucks, she orders from the pictures a caramel ribbon frappacino eventhough it is 40 degrees outside. We go home and the moment is gone.  I am irritable, because I made sure Lynne had her meds, food and coffee and I have not had any of those. So I set her up in her room to eat and watch tv. She comes out of her room and asks what the plan is, is anything going on.  I say "this is not Ruth Byck, there are no activities.  If you want activities you need to get up and go to Ruth Byck tomorrow." She asks if she can watch the parade with me.  I say no because I am eating a huge bowl of mashed potatoes.  Yes I am going to try out for a place on 'my 600 pound life' if I keep eating my feelings like this.  ugh!

I call Jean Anne, our baby sister, to wish her Happy New Year. Lynne talks to her for a good long time. Lynne tells Jean that she is driving me crazy.  I say Lynne is a "whack job"; she agrees.

I make all the fixin's for New Year: rice, greens, black eye peas and ham. I ask Dale to make Lynne ham sandwich. I tell Lynne to come fix her plate. I know try to tell her what is in each pot, but she cannot find the third pot.  I get so frustrated. I give her the black eye peas and tell hefor New Year: rice, greens, black eye peas and ham. I ask Dale to make Lynne ham sandwich. I tell Lynne to come fix her plate. I know try to tell her what is in each pot, but she cannot find the third pot. I get so frustrated. I give her the black eye peas and tell her to go. I realize I have not taken my pm meds. I talk to Dale. I say I know she can't do it-fix her plate, but I keep trying to get her to, then I'm frustrated and feel awful. I was cutting out a quilt; waiting for Lynne to leave the area. I know I cannot use a rotary cutter with her around.

Monday January 6 

Lynne slept all day Saturday...no waking...no food. She stayed in be that is until 2 am Sunday morning when I awoke to her standing near me (sleeping on the couch-now for three months) staring at me. I ask what she is doing-rookie Alzheimer's caretaker mistake. Never ask what they are doing, because they don't know. BUT, Lynne said she was letting the dog out. I say then get on with it because it is 2 am and you woke me up. I am cussing now. I am still half asleep. I groan and growl, "you slept all day yesterday and I let you and now you are waking me up at 2am. Go back to bed. By the way she did put the dog out into the back yard. oh so no Saturday night bath because she was asleep. I wake early to go to grocery store Sunday and get coffee. Lynne is up when I get back. Sunday lunch at Tina's is cancelled. I tell her she can come to church but she wants to go back to bed. Then I start cooking and she shows up dressed in th kitchen carrying her shoes. "Lynne, I thought you were going back to bed." Lynne "Oh I was, wasn't I" and she goes off to her room. I go to the bathroom a little later and Lynne is putting on her shoes. "Lynne, I though you were going back to bed". Lynne "I heard you say we were going to Tina's" Me "I said we are NOT going to Tina's, but you can come to church with me"-Lynne says no. The truth is I do not want her to come to church with me. Neither do I want to leave her alone in the house. Molly is asleep upstairs, but... So. I open breaker to oven so she cannot turn on stove and go on to church. Sermon about expectation from God and following Him for what He has for us. Dale and I plan go to to breakfast. I drive to the park looking for Joe. I have no Idea where he is, but there is free food in the park on Sunday after church, so I go and see no Joe. I meet up with Dale, but do not tell hime what I was doing. Good breakfast. Good time alone with my hubby. I go to McD's to get Lynne two chicken sandwiches. (She did not eat yesterday.) I pull in driveway. My head is barely out of the car when Lynne asks, from front porch, if she can help me. It is so creepy how she does that. I ask how she knew I was home and she says she was in the backyard with doggie and heard/saw me drive up. I give her bag of sandwiches and tell her to go eat. I do not need help. It is more trouble than it is worth to have her help me unload the car. She stresses over where to put anything and frankly, I stress too. What if she drops a glass bottle? What if she cuts herself? What if I have to take her to ED? What if I cut myself because I let her help me-it has happened before. Molly says I stress Lynne, and then she gets flustered. Molly has never been a mother. Mothers have to anticipate their child's actions and responses. Mothers get to know the most likely scenarios. It is different with Alzheimer's. My therapist says the Alzheimer's brain process is out of order like dumping a library card drawer on the floor and putting the cards back in no specific order-then duh the order is messed up. And, Lynne's order of though process is for sure jumbled. 

So, about 6pm I tell Lynne she needs to bathe and shampoo her hair. She says okay. I check on her about 7 pm. She is sitting on the bed next to a towel. I tell her she was supposed to be taking a shower and shampooing her hair. She says okay and goes to the bathroom. I remind her she needs to take off her clothes. I check on her a few minutes later. She is just taking off her shoes. I check on her a few minutes later and she is laying on the bed in her pjs. "Lynne you did not take a shower" Lynne "no I didn't". I remind her she did not take one Saturday. I give up. It is not worth the frustration of another hour. I tell my husband I hope some one reports me to APS. Dale thinks I will go to jail and says: 'if you go I go'. I say not they take Lynne and her money. I guess that is why APS is so ineffective. No one wants to deal with an Alzheimer's person. It is so hard, there is not a strong enough word for hard. I'm just angry. That anger boils over and I become Oscar the Grouch. I feel bad about it but there it is I'm in the anger stage of grief. I eat like I'm trying to get on an episode of 'My 600 Pound Life'. I eat to numb and stuff my feelings. I'm writing this blog to try and maintain. I heard a gospel song about maintain: maintain my heart, maintain my spirit, maintain-maintain-maintain. I though maintain would be a good word for 2020, but no. Who would want to maintain this life. I seek restoration. All things new in 2019, but now i need to be restored. Please God think of me in the restoration of all things. This Monday morning, I wake Lynne at 7 like always. She is dressed to go to Ruth Byck in her pj top. I tell her she needs to put on a different top. It takes her three times going back to her room to get a shirt on other than 'Mischief Managed' pj top