It’s spelled J..E..A..N..N..E..I..N..E

It has been a while since I have written in this blog. Since my last post, so much has happened. I have many half written blog posts and many electronic sticky notes with ideas and random thoughts, but as much as I enjoy writing, it just hasn’t been flowing. Writers block? Sidelined by life? I don’t know what starts and stops the ability to pull together an entire post but here I am tonight, after months of nothing, feeling the urge to write.

I’m sitting up in my dad’s spare room. Mike is snoring on the blowup bed we brought down to avoid the sofa bed we have slept on four times in less than a month. The thing that has brought us here this time is probably the driving force behind this itch I feel to tell the latest in our ongoing story.

I’m sure you have figured out by now that the subject matter is my mom. I’ve been on quite a ride lately with starting a new job, relocating, selling our home … but the thing that is on my mind the most, the thing that keeps me traveling up and down the gorge and the 5 like a long haul trucker, is my parents. And with that intro, the story begins.

Mom has been falling a lot lately. The first few times were relatively harmless falls onto her bottom. One of those falls prompted a visit with her doctor and a series of X-rays. You see, when you are dealing with an Alzheimer’s patient, you don’t know what pain is real and what pain is a result of other anxieties going on in their world. While mom still professes to want to go home, the reality is, any trip outside of her normal surroundings at The Waterford Grand is hard for her. This is a very common thing with dementia. She has learned her new environment. She knows what is expected of her. She knows the routine, how to get to the dining area and how to return to her room. Take her out of that cocoon and her mind has to work so very hard to try to adapt to a new situation, cope with the unknown and engage with those around her that it devises a diversion. We have seen her manifest symptoms of pain, become extremely cranky and even lose her bowels – anything to distract and coverup the fact that she can no longer function normally outside of her routine. In this instance, going to Dad’s 90th birthday celebration brought on complaints of a sore bottom that started out minor and escalated as the day wore on. Not knowing what is real and what is anxiety-driven Mom’s doctor leads with an abundance of caution and we shuffled down the hall where X-rays confirmed that there was no injury.

The two most recent falls have led to emergency room visits and that brings us to last Wednesday. After a fall earlier in the day The Waterford called to let me know Mom was displaying some unusual symptoms and they felt she should be transported to the ER for testing. At the ER they discovered a urinary tract infection and that is when I learned about the Alzheimer’s – UTI connection that prompted a recent Facebook post. In the ER Mom was experiencing hallucinations so the staff decided to have her transported to the ACE unit at the old Sacred Heart hospital in downtown Eugene.

I am going to deviate from my story for a moment to sing the praises of the ACE unit. ACE stands for Acute Care for Elders and it is a valuable resource for our geriatric community. They specialize in elder care with the additional strength of handling even difficult dementia patients. They are a top notch group of people focused on meeting the needs of our old people. I love them.

Wednesday evening went well and Mom was so chipper Thursday morning that Dad was sure she would be released later that day. Then all hell broke loose. During a break in an all-day meeting I called Dad to see if Mom has been released yet. Dad answered and from the panic in his voice I immediately knew things were not going well. Mom had suddenly become verbally abusive to her caregivers, was refusing to eat, and had ripped out her IV. Dad put mom on the phone hoping that I could calm her down. She was in full on conspiracy mode. Incoherently ranting about them taking her clothes, holding her and Dad hostage and poking her with needles in her legs. I wasn’t really able to calm her, but was able to get her to a point of resignation where the nurse felt he could get done what he needed to do. I hung up the phone and returned to the meeting which was back in progress.

About an hour later my phone begins to softly buzz. Checking the display I see the number is from the ACE unit. I slip out of the meeting to take the call. It is Mom’s nurse saying Mom is asking to talk to me. He puts her on the phone and the rants and disjointed thoughts come pouring out. She is all across the board but the main theme is her clothing – they have taken it all away and are going to burn them. She wants to know where Mike is – she says he’s a big guy and will take care of this problem for her. At one point her voice returns to a more normal tone and cadence and with a little desperation she asks “Oh Jann, what are we going to do when the sun comes up tomorrow?” I start to cry and respond “I don’t know Mom, I just don’t know what we are going to do when the sun comes up tomorrow.” After a slight pause, and with a sigh, she seemed to lose the driving force behind her anger. With assurances that we will buy her new clothes and that I will talk to Mike about helping her out, she hands the phone over to Dad.

Dad, now there is another concern. While he is a 90 year old man with the appearance of being 70, these situations are rough on him. He is distraught. I finally convince him to leave Mom in the care of the experts who are trained to handle these situations and go home. He has such a bad night, fueled by his age and anxiety, that he does not return to the hospital on Friday. That is all for the best as Mom gets so out of control Thursday night they put her in a Soma bed for her own protection. Bear with me here because this is where my warped sense of humor and twisted coping skills begin to emerge. Here is a picture of a Soma bed:

 Here is what I visualize:

 When I think of Mom that is all I can picture … she’s in the circus car heading to the next show. It makes it easier to handle the stress of the actual situation we are dealing with.

Throughout this time I have been in constant contact with the nurses station. They are great at providing updates. At this point we are allowing them to get the situation under control. There is nothing we can do and Dad decides to stay home again on Saturday. Mike, some friends of ours, and I are just getting ready to eat breakfast Saturday morning when the phone rings. It is the doctor this time. I immediately know the rubber is about to meet the road. The doctor gives me a brief update – Mom has went into a period of excessive sleep, refusing to wake up even for meals. She has developed a slight cough that could be an early sign of pneumonia. And then the doctor, with compassion in her voice, asks what our goal is with the situation. I hesitate as my brain processes … just as I am beginning to understand the underlying meaning of her question she clarifies. Is our goal treatment or comfort?

Treatment? Or comfort?

Treatment. Or. Comfort.

TREATMENT OR COMFORT!!

And just like that, here we are. We are at the place we knew was coming. The realization that Mom’s quality of life has deteriorated to the point where the goal is no longer to extend life but to allow her to ease into death.

I ask several questions and then let the doctor know that I will confer with my dad and will call her back with our decision. I know what our answer will be as we have discussed this … but I still have to allow Dad to make the final decision. I call my sister first just to confirm that we are on the same page and to ensure she can go stay with Dad if necessary. After hanging up from that call I take a deep breath and dial Dad’s number. I outline the situation and he begins to cry, but through the tears he says “Yes, just make her comfortable. She isn’t living at this point.” He hates seeing her continue to decline and knows she would not want to continue living this way.

I call the doctor back and let her know our decision. She thanks me for making the hard call. She says it is the right thing to do as at this point we would treat her only to be back in the unit again … and again … and again.

This does not mean that death is eminent, it just means that we will let nature take it’s course. We will keep her safe and we will keep her comfortable but we will not try to attain health, wellness and better living through pharmaceuticals. Most medications will be discontinued and they will quit irritating her with finger pokes to check her blood sugars.

Mike and I came to Eugene on Sunday. Mom has remained in her almost continuous state of sleep, waking to occasionally use the restroom and have 2 or 3 bites of food. We went to see her in the late afternoon. She roused enough to visit a little. The rants are gone and she is no longer in her circus cage. I manage to get her to eat a few bites of cantaloupe and mashed potatoes but she keeps nodding off so we say our goodbyes and head back to Dad’s.

Mike said that watching me feed Mom he saw the cycle of life. Yes, God willing, we eventually come full circle. The parent becomes the child. The child becomes the parent.

Today we meet with the care team to discuss prognosis and next steps. I don’t know what the day will bring, but in the way that life tends to teach us, I know we will learn things we never wanted to know. It will be hard, but we know we are on the right path. Releasing Mom from the daily hell Alzheimer’s has caused is the kindest final gesture we can give her.

I don’t know Mom, I just don’t know what we are going to do when the sun comes up tomorrow.

Alzheimers is a cold-hearted bitch. It leaves you anxious and confused; scared and lonely; frustrated and sad. So why is the word comedy even in the title of this blog post? For two main reasons. First and foremost, you have to find the humor. You must laugh. Second and for real, when you can step back and be impersonal, you can’t make this shit up … and some of it is funny.

And herein lies the rub. When Mom is having a bad day and I respond with humor in my voice and lightness in my spirit she responds in kind. When I am indifferent or anxious and respond with distress in my voice and negativity in my soul she becomes more anxious and sad.

A couple of weeks ago we had a “find the humor” day. Mom had a bad night and being unable to calm her down the nurse contacted my Dad first thing in the morning. Dad spoke to her on the phone but was unable to ease her mind so he finished his breakfast and headed over. Things eased up a bit but she remained frustrated and angry. She had a doctor’s appointment that day and when I arrived to pick them up for it Dad let me know she was having a bad day. Mom was in the bathroom at the time and hearing my voice she came barreling out of the bathroom and threw herself against me. She cried “Oh Jann, I’m so scared! I can’t see!” She was terrified. Like trembling and sweating terrified. I took a breath and put my emotions in check and said “Mom, you’ve been legally blind for 12 years. Did you forget?” To which she replied “Oh, hmmmm, well I kind of remember something about that.” I chuckled and said “Let’s make sure nothing has changed. Can you see what I have on and describe it at all?” She could tell it was a structured shirt with stripes, but was unsure of the color – exactly what I would have expected her to say. It took a good half an hour of asking vision assessing questions, reminding her of her eye disease and assuring her nothing had changed before she was able to get back to a calm state.

How horrible is that?!? She forgot she has a disease that gradually took away her vision years ago. She thought she had suddenly and out of the blue been stricken blind.

As you may have guessed Mom has taken another step down in the Alzheimer’s spiral. She has begun to prowl around at night, something quite common as the disease progresses, and something I am glad Dad doesn’t have to deal with directly. But sadly, he is not getting off unscathed. She often wakes up disoriented and thinks she is at home … and she can’t find Dad. She comes out of her room looking for someone to help her find her cheating husband. God bless the care workers who help calm her down, try to ease her mind, and get her back in bed. On a great night they are successful, she goes back to bed and doesn’t remember a thing come morning. On a mediocre night they can ease her mind enough to get her back in bed, but she’s restless until morning and still agitated at breakfast. On a bad night they hold her off as long as possible before giving my dad or I a call. So far that has been rare but if it becomes a problem we may have to restrict her calling hours, something Dad does not want to do.

And then there is Dad. He’s probably the biggest victim in this scenario. He knows exactly what is going on. He has watched his wife of 59 years leave him one day at a time. He goes to see her every day and then goes home alone with the echo of her words in his head. She wants to come home, she doesn’t like living apart, she’s afraid he is cheating on her. He used to say he would rather lose her than see her live like this. With this recent change he now says he looks forward to the day she no longer remembers who he is. You see, it will rip his guts out but he will know she is no longer in a state of agitation.

So, where does that leave us? In my mind it boils down to three choices:

1. React with emotion. Wring your hands and gnash your teeth. The results? Everyone gets stirred up. Mom senses it and her agitation and anger worsen. Dad becomes increasingly upset and sad. I go home feeling like a rung out dish rag.
2. React with no emotion. Remain detached and clinical. The result? Mom senses she has done something wrong and becomes sad and weepy. Dad shuts down. I feel like the ice princess.
3. React with humor. Honest humor, not a plastered on smile and stiff ha ha ha. Lighten up, don’t over react. The result? Nudging Mom with a little tease makes her feel like everything will be OK and we will be here for her. It makes Dad feel like a co-conspirator as we make eye contact that projects “nudge, nudge, wink, wink” to each other. I feel like a successful tightrope walker – I made it to the other side!

It isn’t all humor. Sometimes I cry. Ugly, sobbing, messy crying. I often feel overwhelmed. I cringe when I visualize myself in her place in 35 years … please let it be 35 years … (Ryan and family, you had better find the damn humor!) Dad and I have serious talks and I look him in the eye and have compassion for his pain. I hold Mom’s hand or give her a hug and every fiber of my being is attempting to project comfort and support.

Do I wish things were different? Absolutely. Do I feel a pang of guilt when I giggle at the ludicracy of her forgetting she is blind? Every damn time. Do I realize that I am making things better for all of us? Hells to the yeah!

The lesson I hope that I am imparting is, find what works for you, for your family, for your situation. No matter what you are going through, be it caring for a loved one, a cancer diagnosis or just navigating your daily life. If you need to cry, cry. If you need to laugh, for the love of God, laugh. If you need sarcasm, channel Bill Murray (or insert your favorite deadpan comedian here) and think or say something that makes you feel a bit scandalous. If you need to hit something there are places called destruction zones where you can do that without fear of jail time or the expense of replacing some household item that you just broke!

Be true to yourself. Feel every emotion you have WITHOUT shame. Remember my journey and know you are not in this alone.

True confessions of an imperfect daughter.

Almost 3 years ago my mom was diagnosed with Alzheimer’s dementia. At that time she went through an evaluation process and it was determined that she was probably 2 years into the disease. I had an “aha” moment and twinge of guilt. Not knowing what was going on with Mom I had become increasing frustrated with how self-centered she had become. I remember hanging up the phone in frustration one evening and telling Mike that my mom had become even more of a self-centered bitch than she already was.

You see, my relationship with my mom has not always been easy. I’m not going to try to analyze it in this blog post but suffice it to say she had issues, I had issues, families have issues. I believe our issues were pretty standard, with our own unique family dysfunctions. My mom has always been high-strung, nervous and cold; as her disease progressed those traits were magnified. To calm her nerves, give her a slight mental boost and soften her interactions with Dad her doctor decided to place her on her first dementia medication and a low dose anti-depressant.

What a difference! She got a boost in cognitive function and I had my mom back with the added benefit that she became more easy-going than I had ever known her to be. So here is the first part of my confession…I liked her better this way. The barbed comments, negativity and cold assessments were gone. Mom has always been sharp and quick-witted, with this change she became even funnier – no filter but also no back-handed digs. This is why I have repeatedly made the comment that my mom is gone and I am caring for someone else now.

My posts have been made during this period time. The challenges have been hard and Mom continues to decline but the relationship has been strong and easy. I’ve shared the honest truth of it here with you. But there has been another change since placing her in memory care and I know that to keep this blog real and relevant I had to confess the struggles to you, my readers.

Mom took the news of her move fairly well. We settled her in to her new apartment and all was calm. Within the first two days a change began to happen. I don’t know how to explain it, and I assume it may be common, but her mental wheels began to turn more than they have in a long time. I think being thrown into a new situation activated her “fight or flight” mechanism and she began initiating conversations again, being more aware of her surroundings and of those around her. This change also brought back frustration. She wants to know when she gets to go home. Who makes that decision? She knows she has not seen a doctor since being here so who is evaluating her? Then the issues become more personal…will she ever live with my dad again? Are other women flocking around him now that she is away? Will he move on without her? Are we dumping her? We have decided to be honest with her and answer her questions directly and with compassion. It is hard, she is sad but as we talk she thanks me for not lying to her. This tears at my heart…

Then it becomes even more personal. She is pushing my buttons; bring up past criticisms, opening old wounds, saying things that used to rile me up. I kept my emotions fairly well reined in, only popping off a sassy retort one time. Stuff it down, do what needs to be done, finish what I came to do and make sure she is settled before I leave. Done, done and done. Success.

I get in my car to head home and all those stuffed down emotions come bubbling out. I. Am. So. Angry. At her for making me feel things I haven’t felt in years. Angry at me for letting it get to me. Angry at her for ripping open old wounds. Angry at me…for gods sake she has a disease, surely what she was saying was not intentional, just a muddled up mind lashing out at the one who is near. Angry at her for…what? The past? The guilt? The shame? This interaction happened two days ago and I still don’t know. I still haven’t fully come to terms with it.

I have a therapist I see on occasion, I like to say I see her when I need to get my head screwed on straight. If you have never met with a counselor, priest, pastor…any impartial third-party, I highly recommend it. Talking things through with someone who has no skin in the game, whose sole focus is on you and your well-being, is extremely helpful. I am seeing her today. Thankfully this appointment was already scheduled – I knew I would need to get grounded after moving Mom and prior to Mike’s surgery. It is almost guaranteed that my outlook will change and I may wish I had waited until after my appointment to make this post. But I owe you all reality. I’ve promised the good, the bad and the ugly. Well, right now it is ugly. I’ll keep you updated as I work through this next phase. Being human is hard and the struggle is ongoing.

Some of you are already on this journey, some are farther along than me, some have just begun and some fear it is on the horizon. Let me tell you, it is a marathon. Learn all you can. The 36 Hour Day by Nancy Mace is a good place to start. It is a roadmap that helps set your expectations for what is to come. Your next step – get you a person; a therapist, clergyman or someone else who is not part of your inner circle. To get the most from your person be 100% honest with them. It hurts at times but if you only say what you think they want to hear, or share the version of yourself you want to be not who you are, you will not get the help you need.

Lastly, laugh when you can; cry when you must. Know that you are not alone.

You probably knew that with what is going on with my mom a blog post would soon follow. Writing helps me. Getting the words out of my head also releases them from my heart.

I’ve known this day was coming for quite some time but I don’t think you can ever be fully prepared. Mom can rally and be fairly cognitively aware and yesterday was a good example. As each of us kids showed up I could see her becoming a little more suspicious of what was going on. We live far enough apart that other than formal family gatherings it is rare for all of us to be in one place at the same time. As the last of my siblings arrived I actually saw her start doing a head count. And then the meeting was called to order…

She took it well, my dad not so much. He was pretty weepy and had to make several trips to the restroom. We loaded up the obvious stuff and made decisions on the lesser things fairly quickly. My siblings and I work well as a team and before noon we had two pickups filled and were caravanning our way over to Mom’s new home.

This is where the picture in my head of how things would go started to deviate from reality. Not in a major way, but in minor nuances and “aha” moments. There wasn’t any hand holding from the facility. We were basically left to ourselves to move stuff in with no formal intake process. (The intake process happened later in the evening, once the chaos of the daily activities of the ward died down.) It was right at noon so they offered a lunch for mom and it was helpful to have a place for her while we setup her room and got things in order.

Once last-minute things had been brought from the house and the final touches put on the room I started to see the gap. I hadn’t really thought about it. We were all eventually going to leave. Even Dad. Mom would be left in a new and unfamiliar place. Unable to effectively get herself around so she could learn her new surroundings. Even navigating the logistics of her room will not come easy for her. I started to fully understand exactly how many things Dad has been managing. Every. Single. Day. Day in and day out.

He gives the structure to her life. Hours, days, weeks, routine, these are all lost to my mom. Dad gets her up, makes her breakfast, gets out her pills. He runs the TV and makes the calls. He knows when it is time for lunch and gets them both to the dining room…same process for dinner. He fixes her bra when she puts it on backwards. She can putz around getting dressed, lay down and take a nap halfway through the process, and when she finally emerges from the bedroom Dad will remove one of the shirts if she has put on two. In one fell swoop this safety net is gone.

My mind knows she will have a new safety net, one that will develop over time as her old one did. A safety net that will come with many extra things my dad can’t provide, but the heart discards that and runs on pure emotion; logic be damned. She will have a new safety net…

But it won’t be us.

I felt like a parent leaving a child at school for the first time. Will she make friends? What if she doesn’t get along with others? Or others don’t get along with her? Will people be respectful of her things? What if someone takes something that belongs to her? Who will stand up for her, defend her, protect her? What if she gets confused in the night?

This being a memory care facility the typical social aspects of coming into a new community aren’t there. Many residents are in their own world. Introductions are awkward at best and will probably need to be repeated often. Everyone is confused and lost to some degree. How will she get integrated? How long will it take? There is no road map. I just want a god damned road map.

I feel like a fool that these things had not crossed my mind until yesterday evening. It doesn’t change my mind on the decision that was made. This change was necessary for so many reasons; for the well-being of both my mom and my dad. I just wasn’t prepared for the stark reality of the depth and breadth of the gap that will slowly need to be filled.

I woke up several times in the night and each time wondered if she was awake, confused, lost. I want to get in my car and go see how she is doing. At the same time I know she needs time to assimilate. We need to find the perfect blend of involvement. If we step in too much and try to fill the gap she will not get the full benefit of what The Waterford has to offer for her. So, here we go, another new normal. I am getting very tired of new normals. What is wrong with things just staying the same?

The short answer is, that is life. Ever changing. There is no normal. Adapt and keep moving forward. Humankind has been doing that for years on end. I am not the first person to want the cycle of life to stop and I am sure I won’t be the last.

Tuesday I took my dad to see the last two living facility options for he and my mom. We started our tour at The Waterford Grand, an assisted living and memory care residence that is a possibility for my mom. As with every place we have visited (this was number 4) I see Dad’s shoulders begin to sag as his eyes scan the rooms, the dining area, the current residences. It is hard for him but he has very specific things he wants for my mom and there is no better way to get a feel for the facility than to take the tour. I know he is visualizing Mom here. Getting a mental picture of what this next phase of her life will look like. It is not a pretty picture. No matter how grand the accommodations, how caring the staff, this is not the future he envisioned. He often says the shine as been taken off the golden years.

Our tour guide is a nice young gentleman who shows us around the facility, pointing out the amenities and showing us a couple of different room options – private and semi-private. Dad doesn’t like the semi-private one at all. Two suites with a shared Jack and Jill bathroom. You can’t lock the barn style entry doors and he voices that concern. At this point it becomes obvious that this nice young man doesn’t really understand much about the needs of Alzheimer’s patients but he is solutions oriented so suggests putting a wedge up against the side of the door to keep it closed. I seriously had to refrain from slapping him upside the head! My mother has lost most of her reasonable thought processes due to this disease. She doesn’t shower because she can’t remember the steps it takes and the order to do them in…do you think she’s going to remember to remove the wedge so she can open the door so she can access the restroom?!? Herein lies one of a myriad of problems within the elder care community…but that is a post for another day. He means well so I refrain from slapping him or pointing out his assessment error.

We conclude the tour and as we are getting in the car Dad says that if a semi-private room is the only option available then maybe it would be OK as long as it is a woman in the other suite. Jealousy? Fear for her safety? Protection of her dignity? Probably a mix of all. He takes his duty to care for her very seriously. I tell him he has worked hard and they can afford the slightly higher fee for a private room; we are in no immediate hurry and can wait for one to become available. That seems to make him feel a little better. Restores his pride. Due to his years of hard work and thrifty living they have options. He can take care of his wife in this new normal.

Our next stop is Willamette Oaks, an independent living solution for Dad that is right next door to The Waterford. It is within easy walking distance for him to visit mom. Willamette Oaks is an establish senior community with a comfortable, home-like vibe and an involved resident community. We meet with Kay. She is a young expectant mother who has a calm, old soul, demeanor. We sit at a table in the dining hall so she can get to know Dad. The conversation is pleasant and at one point she looks my dad in the eyes and says “This must be very hard for you.” Not superficial small talk, genuine care and compassion. Dad begins tear up and cry. She doesn’t panic or abruptly move on to a safer topic. She leans towards him and reaches out a hand…and says nothing, she simply allows him to work through it and regain his composure. I love this young woman.

Dad takes a deep breath and says, as he has several times lately, “If I am going to lose her, I’d just as soon lose her.” And then he adds “I can’t even tell her what we have been doing.” He tears up again.

And that pierces my heart.

For 59 years they have made decisions together. They have had a relationship of trust. He is trying to do the right thing, see that Mom is cared for, and all the while he feels like he is betraying her.

I don’t even know how we navigate the next steps. Mom will need to be assessed by a nurse so an intake and care plan can be constructed. We will need to move furniture and belongings into her new home and make it feel cozy and comfortable. We will need to distribute so many of her things, collectibles; art work; quilts and crafts to family. Where is Mom during this process? With her decreased mental function and inability to really understand what is happening and why it must happen, being part of the process will be frustrating and upsetting to her…and not a good situation for those of us trying to make it happen. Shutting her out of the process feels wrong too, like we are setting her off to the side, or putting her in some kind of limbo, or behaving as if she has already passed away. Neither option feels good, but is something that must be figured out, and soon!

I don’t have a conclusion to this story. I don’t know how everything is going to go down. I’m going to take one step at a time, consult with experts and meet with family members. This is uncharted territory for all of us. I’ll keep you posted as we move forward. If you ever find yourself in this, or a similar, situation, it is my hope that I have helped in some way. Maybe in pointing you to a resource, or giving you a small road map or possibly just instilling some peace of mind knowing that you are not alone.