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My mother-in-law just died and I couldn’t be more relieved

20 Apr

Arden CourtPart One: The Back Story

My husband was legally adopted when he was nine by his grandparents. They had been the only constant in his life as he was handed off between his biological parents, (not to mention, strangers and steps) passed around over time between eight states spreading across the South East throughout his early childhood.

Although he and I dated as teens, I have only vague memories of his parents from back when. Mostly I remember teenage woes of how strict and insistent that he learn about financial independence early on, which adulthood tells us, are traits of good parenting but at 17 and broke, really suck.

Fast forward thirteen years: While B was ending a ten year marriage and I was sinking in my own troubling sea, somehow he and I found each other. Coming from the same town we had graduated from, we now had two sets of parents to visit together on our trips home. His parents were now in their 70’s and 80’s. I confided to a friend over brunch my self centered worry. “What if one of his parents dies and I have to see her (ex-wife), at the services?” Looking back, I would welcome that scenario not to mention, how insecure was I!?

A couple of years and some sporadic visits later, nervous about how they would take the news of our upcoming marriage, we sat in the kitchen and told them our plans. I had never sat in the kitchen before. It felt strange to me being somewhere other than the living room. His mother, distracted.
His dad was your typical sweet old man. Lousy jokes and a bit flirty, eager to tell a story from his time as a pilot. Sometimes when B could not come to town with me, I would pop in on my own for a visit and dad would share family stories and secrets. Mother’s attention always on CNN, seldom adding to conversations, sitting comfortably in her recliner trying to hear over our chatter. A little forgetful, always freezing, redundant in her concerns for me making the 100 mile drive back home alone.

Holidays come and go. Increasing visits lead to increasing worry. B’s dad was pushing to get legal things in order and was not looking well. We began hearing the same stories more frequently, but this time from him. He was drained. I confided in a coworker that the way we all expected the order of things to go was probably not going to happen. I had my black dress mended. I do not always like being right.

***********************

Knowing we would probably not make it back to town before B’s ski trip we made a detour visit on our way to see my side in San Antonio one weekend. We popped in with some pamphlets on med alerts. His father was angry. What would we be able to do living so far away? He had neighbors he could call on. But that was the point. Push a button and the service will send someone and we will get a call immediately. This was met with curses and confusing money rants that we were not following. We sat stunned at the backlash then in silence for a moment when B’s mom chimed in and explained exactly what we were meaning, adding that she sometimes worries when he steps out to run errands. The subject was dropped and very quickly, the visit over.

********************

Part Two: When your Dad dying is the easiest part of what is happening

Two weeks after our awkward visit with B’s parents, while at a stop light I scrolled through Facebook to see our sister-in-law had posted that B’s dad was in the hospital. I called my husband. He had just gotten off the phone. In an hour we were packed, had a friend lined up to look after the house and on the road, I drove as fast as I could as my husband sat quiet. Not sure when we would return, never could I have guessed that it would be four months later.

B’s father had had a heart attack. His mother, Betty, did not call on anyone to come for help even with access to two telephones. Her mind, rocked by a stroke years before was falling apart, being eaten away by dementia. Only able to get around using a walker, unable to stretch over even a small incline, Betty remained trapped in her home, blocked from any exit by her husband’s body. Piled newspapers out front alerted the neighbors that something was not right. After a failed attempt to get into the house, their eldest son that lives 7miles away was called with a key, to find dad, still alive, almost to the front door and Betty, dehydrated and soiled, unable to communicate any details of what had happened. Taken off of machines, her husband passed away two days later, his insides unable to recover from the atrophy of waiting so long to be discovered. We had told him before that we would take care of Betty. Even if that meant moving home.

Those two days B and his brother were in and out of the hospital, I was on the phone trying to figure out what to do, not realizing how grave Betty’s condition was about to become. Docile and quiet I stayed with her. The idea of sharing duties with my sister-in-law quickly disappeared when she stated that she did not want to stay with mom in the house because it was “creepy”. Although 15yrs older than me, her teenage son laughed and said, “my mom is a child.” And once B’s dad passed away, appearances by them were rare.
My mentality for getting things done became, “if not me than who?” Over the ensuing months I asked once for help to run an errand. I had not showered in a couple of days and was on little sleep. My request was met with blank stares.

*****

We decided to wait to tell Betty her husband had passed. It took a week to get her eating and drinking regularly. One could see her mind trying to make sense. Why were we here? Where is he? She tells me she was scared. She was alone in the house. She says she is glad we are there. She never mentions the heart attack. It is days before she asks for her husband. We say we have not seen him. We say we don’t know. We try to get her on a sleeping schedule. The circus arrives in the form of an expensive private care taking company. If the aides were not on drugs, sleep deprived or out of their league completely in skill level, they were sleeping on the job while Betty wandered outside to let the dog out at 5a.m. Instead of depending on them for her primary care, we used them as a back up and even then they failed. CNA’s, Hospice nurses, care takers, social workers. They all aggravated her situation.

See Betty walk until her feet swell. See Betty think B is her dead husband. Hear Betty curse me for being the other woman. See Betty break B’s heart when she asks, “Why are you doing this?” or “What happens when we want to get married?” See Betty fall, over and over again because she is so weak but her mind will not let her rest. See Betty have a moment of clarity and ask me to drive her to the hospital because something is wrong with her mind. Things are not making sense and she is scared. See that last five minutes. See Betty cry. and cry. and cry. She says she wants a gun to kill herself.

B spends his time in the office still trying to organize his father’s affairs. Probate is stifled. Betty must be deemed incompetent. She looks to us for help with the year. The President. When asked to write any sentence out, while I was secretly hoping it would read, “Fuck you”, it was a nonsensical, “Usa Today”.
B and I are both so. exhausted. Sleeping with a baby monitor by my ear. At the slightest turn I grab my phone to check the cameras. She gets up, I get up to literally catch her as she falls. We share this duty. Similar to having a baby, I make sure she is bathed. I dress her. Set her on the toilet. Clean her after. Fix her hair. Make her meals and snacks. Cut her nails. Rub lotion on body. Wrap her swollen feet. Write everything down. Make appointments. Keep my husband sane. My turn to cry.

Unraveling, B is called back to work. He leaves us both but lived amongst us virtually unseen anyhow. She hates her life. I hate mine too. Too many new faces in and out of the house. We are now both demented. But she is clean and fed and loved because yes, I love her. How could I not? How can one do so much for another without that love? But it is evident this situation cannot last.
Betty tries calling her parents using the remote control. Betty leaves the stove on. Betty is hitting the caretakers. Betty is trying to open the car door while it is moving. Betty put her pen in her tomato juice. Betty is confusing television with real life. No more SVU.

Notes to myself during this period:
6/10 He doesn’t tuck me in here. There is no free time to waste. Pushing limits. Surprising ourselves

6/12 It’s hard for me to be grateful for all that I have when I know that he isn’t and we have all the same things but mainly each other.

6/29 Marriage: The good the bad and the worst get-away-sex ever.

7/3 Now I’m doing it. Fighting sleep. Enough.

7/4 I guess I never think that he misses me or thinks much of our time together

********************
Part Three: The Move

The search begins for a facility. A dear friend and nurse gives me some direction and I take a couple of days to visit my husband and look for the right place. Damn straight I am not leaving her behind. Betty is coming with me. I could give a shit if she knows my name. She knows I take care of her. She looks for me when I am not at home. She calls out to me. When I leave her with her sitters it is with a note because Betty will not remember that I have told her I will be right back. It is what Bruce use to do. I come back. She calms down but only for a moment.

There is no room I am uncomfortable being in now. She asks for Bruce more and more. Now that B has gone the lack of a male in the house has really thrown her. She spends hours, to the caretakers’ dismay, searching each room, knocking on doors over and over and over.
I break the news to her other son. I feign like I care what he is feeling. Other than a handful of visits while I was out of town any help or concern for anything other than Betty’s financial affairs has been nil. He seems to have a real distain for me. Lucky for me I am use to that.

Her room had already been decorated with her favorite things. Art from her house hung. Statuettes and figurines on the shelf. Flowers displayed. I made sure to drive the staff insane with my demands and inquiries. I am there hours at a time, every day making sure things are on the up and up and getting her settled in. I am quickly disappointed. The big change has accelerated her condition. Though we walked her in, it takes a week for her to be confined to a wheelchair.

The caretakers are hit or miss. Some are good, some are great and others are there for the paycheck alone. But the place is clean and there are nurses on staff until 11pm each night and we still have our Hospice nurses who continue to be great and eventually we get her meds leveled out. The other residents are all in different stages and levels of alzheimer’s or dementia. The set up of the home was great. Betty lived in a place called Boat House. There was a front porch, a living room, and a dining room for her wing mates. There were about 12 of them. Everything painted blue and meant to be nautical. The other wings were different. One Garden themed and one Country. There was a pet bird in the corridor, also named Betty and realistic activities for most of the day. The activities director is the Ambassador to the Alzheimer’s Association and has been to D.C. as such. There were flowers planted along a circular path and unlocked doors for residents to wander but of course only unlocked within the fortress.
We were lucky to find the place.

**********
Part Four: The Release
There were many ups and downs for Betty but her condition worsened to a worrisome level two weeks ago. She no longer wanted to eat. I had seen her do this before. Pocket her food. I could get her to eat but sometimes feeding her lunch took almost two hours. Then out of the blue she would snap out of it and was back to rolling her eyes and making sassy remarks. I told B to call his brother and suggest a visit, the last one being the month we moved her in, to my knowledge. That was around August. It is now mid April. He did not have the gas money is the excuse relayed to me a few months ago. We decided to hire a private sitter to allow Betty to rest, out of her wheelchair without the fear of a fall for only a few hours a day. She was to start on Monday. The Sunday before we got a call from her Hospice nurse. Betty was in serious decline. We spent the next few days by her side. She was no longer speaking and had not eaten in days. We had never seen her bed ridden. Not like this.

The second day her face relaxed. All her wrinkles disappeared. Everyone commented on her great skin and how comfortable she looked. Her breathing slowed and a fever escalated. We said our goodbyes and cried standing over her on Tuesday talking with our social worker. I told her, “I just want this to be over. I want her to have her whole mind again. She is always so confused and scared and frustrated. She wouldn’t want to live like this. No one would want to live like this.” I did not want that for her anymore. When I think of eternity or a “heaven”, I think about being reunited with the Universe on the next level. Seeing loved ones left behind from that realm not from a puffy cloud in a blue sky, but as energy and dust in the grass, in the air, in the stars. Everywhere. I wanted her spiritual mind to be complete and for her essence to join Bruce’s. B and I called the Chaplin to say a prayer and her Hospice nurse told us to get some rest. She said sometimes a person waits until they are alone to let go.

Waiting for a person to die is very similar to waiting for someone to be born. A nurse tells you it is for sure happening. A count of how many breaths (or contractions) a minute is taken. Family comes together and hangs around being of no help. And finally once you leave because it has gone on for hours and hours and seems to have no end in sight you say you’ll be back, and that is when it happens. Someone records the time and tells the family it’s over. At around 5:00a.m., like fireflies released from a jar, Betty joined her husband once again with no cares and no fears and hopefully no second thought to what’s going on down here. Betty, it was an honor.

A home is a home is a home

30 Nov

After a change in anti-psychotics, awake for almost four days straight, 4a.m. I woke to her calling out. YOOHOO!!! Over and over. “YOOHOO!” I followed the calls to the dining room. “YOOHOO!”
With the exception of her underwear, Betty sat naked at the dining room table, her caregiver scratched and at a loss. “YOOHOO!” fidgeting with a camera case on the table. She looks up at me. “YOOHOO!” The urgency of the word knocking the silence off the walls. Angry at God and terrified, I scooped her lead body up from behind and somehow managed to get her to the bedroom, dressed and in bed. As she kicked and hit, not knowing what else to do I held her legs firmly, trying to soothe her best I could. “tshh, tshh, tshh,” over and over. Finally, sleep came. I took her off the meds, called our aides and told them not to come. She slept for days. While she slept, I cried.
******

The point was to keep her in her home. To figure out our lives around hers so she could be comfortable. What we were too dim to realize was that without her reason, what kept her mind working, her husband, nothing made sense. Her routine was disrupted and suddenly their quiet house in the woods was bustling with nurses, CNA’s, social workers, around the clock sitters, her son and that girl. Our good intentions accelerated her condition and now all she wanted was to leave. Where she wanted to go depended on the day but usually it was to see her parents in Philadelphia. To go home. “Is the car gassed up?” “Do you have a license?”
But it was always too late to be on the road. And we did not want her father to worry. So we would get some sleep with the lie that we would be leaving first thing.

For weeks we were being told that it was time. Time to get her somewhere while she could still adjust. Somewhere they could care for her properly for less than what was being spent on the thieves, drunks and liars being sent by the agency, (not to mention the weird lady we found in the classifieds that wanted to throw rolled up socks at her like a cat). So when B got called back to work I began the search.

What most people do not know is that I was not at all close to my mother-in-law before her husband died. I had vague memories of her being strict with her son when we were teens. This time around, over the past three years during our visits Betty would watch CNN turning the volume up when she was tired of hearing us talk. B’s father and I were building a relationship but still only beginning to get familiar. For Betty, she only knew that I was tied to her son through photos.
On one of the first nights after her husband passed as I was getting her ready for bed she grabbed my hand and asked me not leave her alone. My heart ached. I said she would never be alone. I gave her a hug. She said she loved me and there I did not care that she had no idea who I was. She was afraid and I loved her too. It became all that mattered.

*****

When she sees me her eyes widen. She asks, “When did YOU get here?!” She no longer walks on her own. I push her chair around and we listen to classical music in her room, which is decorated with all of her favorite things. In her recliner she moves her feet to the tunes. If it is warm out I put her sun hat on and we walk along the path outside. I push water in her face throughout the visit because even the good ‘homes’ are lacking and I want to make sure she is hydrated. My thoughts are forever with her bowels. I try to time visits around lunch to make sure she is eating. We don’t talk much because there is not a lot to say but often she starts out with an, “I’ll tell you, this place…” and shakes her head.

We sit at the same dining table every meal. There is Rae. According to her she never married because she didn’t need a man to take care of her. She worked hard and bought herself a Cadillac. She’s from San Antonio, has 6 siblings but only one brother. He lives in Austin. She played the trumpet in a nightclub for a time. She doesn’t know many Mexicans because they weren’t allowed to socialize with them. Oh, and everyone is a jackass.

There is Tony. He is an author from Cuba. He is not very talkative but he does makes kissy noises at me, grabs my hand and says gruffly, “beautiful girl”. Yeah, I like Tony. He will not eat his greens but he will eat three desserts if you let him. And unless you want to get smacked or stabbed with a fork, I recommend NOT touching his napkin, soup spoon or anything else really, on his side of the table.
The three of them make a good group. Rae gets up, grabs her walker. Betty calls out, “Wait for me outside.” even though they are never seen together beyond the dining room walls, she replies, “Okay.”

The place is the best out of the ones toured. Quirky and cute when it is being shown. Each wing with a theme, a front porch and a mailbox. The colors chosen from studies of what is calming to people losing their minds. Most of the staff are not whistling down the hallways because they love their job but some do. There have been some falls, a hospital visit complete with stitching glue and a small hematoma, and many more minor frustrations and concerns but all in all…
I do not get out to see her everyday. Mentally, I just cannot. And even though I know it was, I will not say it was the best decision. It was the decision that was made. It was what was less worse. I am sorry there is no real close to this entry. Too much has happened and it is 6a.m. and I have watched the cursor blink and chase typed words away trying to feel better about things. Maybe there is no feeling better to this.

Just when you think things can’t suck any more, they do.

15 Jun

Alaprazolam keeps her seated somewhat but makes her more confused than usual. Lorazopam at least lets her sleep at night but I think that is because she stays up for twelve hours at a time walking from room to room to room looking for what, she doesn’t know. “Why are you getting up?” ” I don’t know.” she says grabbing for her walker, her feet swollen and puffy with fluid from her poor circulation. Halo-something rather has the opposite effect of what ever the hell it was suppose to do in the first place. It is all trial and error. Our attempt at making- whose life easier? I don’t like to keep her medicated. I have cut back to keep her from being too zombie like. The worst realization I have had is that there is no pill combination that will bring her memory back nor pull her out of the fog; B and I living in that season of Lost where the island keeps jumping through time, given little clues to know which era of Betty’s life we are in.

We try and make sense of the swings. Forcing logic, listening for Mozart in a cat’s heat.
“Well, I gave her her medicine late.” “Oh, she didn’t get much rest last night.” “She’s reacting from the company. The pills… her lunch…I noticed when it’s dreary out she gets this way….” There is no rhyme; and reason left the building years ago.

There is just Betty. Betty who always gets her way then screams for help because we aren’t letting her do what she wants. She will let you know, she is NEVER coming back here once she gets home. And if you ask her, she hasn’t had a bite to eat since yesterday. She rolls her eyes at B when he calls her ‘Mom’ because she does not get why her husband is teasing her and why am I touching him? I sleep with the door locked and keep the knives at a distance. He is suppose to play along but pretending he is his father is too much. “Yes, MOM.” “What do you need, MOM?”…Then she looks at me and complains how B never comes to visit and asks again to call her husband.

Her husband. Up until his heart attack, my 79yr old father-in-law was doing everything on his own. Yes, they were in their own routine, and things have quickly deteriorated because that routine has been disrupted but still, a man more than B and my combined ages was taking care of this woman’s madness all on his own for years. Amazing. I have found notes around the house. “Gone to HEB. I love you, Bruce.” We know from him he tried to get all of his errands done while she was sleeping. We know from her, she was scared when she woke and he wasn’t there. It is something she says often in her confused searches, “He wouldn’t just leave and not tell me where he is going! Where is he!???” It has almost been three months.
And like clockwork, once Betty learns that her husband has died she immediately wants to call her parents. Doing some simple math you can see why this is problematic.

If it were merely Betty’s condition we were dealing with I could handle this better. I tell B if it weren’t his mother I could punch out and go home to get some sleep then come back to it with more enthusiasm. But then I remind myself if it were not his mother, we would be home.
We have help but the help has proven themselves unreliable and inexperienced be it private or through an agency. I am always on call. Just in the next room to come out and calm her. To dismiss the sandwich that is about to be made to prepare a real lunch. To stand over the caretaker to make sure she is being properly dressed, or being spoken to with the right tone.
I am tired. Tired of hearing what a wonderful thing we are doing. Tired of telling someone their spouse is dead. Tired of pretending this is the first time they have heard this. Tired of going through the same motions every night. There is a toll being taken. My eyes burn from crying this week. On Tuesday B and I were married ten months ago…
*****
Sitting with the Hospice nurse as she fills our her paperwork, I cringe as Betty leans in to read…
“WHO HAS DEMENTIA!?”
Her nurse smiles and says, “We all do.” She is not wrong.

Who’s on First?

25 May

In trying to describe what some really difficult nights are like for us I have heard B say it is like the movie Groundhog Day. In it, Bill Murray wakes up to re-do the same crappy newscast in the same shitty town over and over again until he gets the entire day right, which in his case means getting the girl. That same thought had crossed my mind but it didn’t quite meet the level of stress and anxiety. Then I thought about the movie 50 First Dates. Although there is some real fear in Drew Barrymore’s character not having a short term memory, thus forgetting she had met the man of her dreams, married him, then had his child and was stuck on a boat to watch a video every morning recounting all of this, has a darkness and comes close,(especially since it is an Adam Sandler video she is sentenced to see for the rest of her life), it does not quite get there either. The winning loop, the loop we are currently stuck in, I can only compare to, "A Nightmare on Elm Street, Dream Master" clip.

When Betty wants to use the phone it is an ordeal because everyone she wants to call is dead. It makes no difference whether we tell her this or not, be it her sister, her parents, her husband, because five minutes later she is searching for the number and telling us all over again that she would like to use the phone and do we have the numbers? A phonebook? Could we perhaps call the operator to help? We made the mistake of letting her do this once after much hesitation, debate and finally her smashing her walker on B’s foot in a huff. She dialed the operator, tried to tell the automated voice she was looking for her parents, then followed the prompts pushing the buttons on the television remote.
We try but are not always able to change the subject.
“We only have a phonebook for Texas. The operator will want a first and last name and probably a town, what should we tell them? Where do you think you are? Look at that dog!”

B has worked out that where we are in time and space depends on which room we happen to be in. Betty remembers Idaho in the living room. The farm; a car accident. When we are in the kitchen she is a nursing student back in Pennsylvania, out past hours. They will be looking for her. She asks if she can stay the night with us until she can find her wallet and make her way up North the following day. “Sure. We have a room all set up for you already.” Then once we take her back we have travelled to Texas and she wonders how all her stuff got there.
It is a tedious subject, the phone and where her husband is but nothing compares to the job of keeping her in bed and off of her now swollen feet. Betty once stayed up for almost 36hrs. Sleeping pills nor pain killers could keep her mind from puppeteering her body. Spinning and spinning, the way women keep themselves up at night with worry but ten fold. Up and down to check the lights, the locks, the dogs, the shades because Betty forgets she just laid down from checking them a moment before. I listen for her on the baby monitor through the night when there is no sitter, watching her on my iPhone through the cameras hooked up throughout the house. “Hey Betty. Why are you getting up?” “I don’t know.”
B says she can hear a mouse fart across the street. He imitates his mother, “Did I hear a piece of cotton touching felt?” But once asked why she is getting up there are a lot of “what’s, huh’s” and misheard phrases. “What time is it?” “Midnight.” “Do I have to eat tonight?!”

So this is our life together as newlyweds. Not having the time to mourn his father, we only grieve the simple life we left behind. An opportunity to laugh turns quickly to tears because emotions are so stifled they seep out given any chance. This post sounds like a real bummer and I will admit the situation is not ideal and it sucks on many, many levels but I am learning so much and in the end, in her finale, B and I will have a clear conscience knowing we did everything we could to keep Betty safe and comfortable. We have been told the woman B knew growing up is long gone but the fragmented person in her body is the only mother in law I know and when through the confused tears she squeezes my hand and tells me she loves me I know we are doing the right thing. For now at least.

Life with Betty

9 Apr

“Do you ever sleep?”
“I sleep when you sleep, Betty.”

She recognizes me, reaches for my hand, and on her good days gives me shit as any other mother-in-law would but she cannot tell you my name. And no, I do not sleep. I nap between the care takers’ shifts, periodically checking up to make sure they are more alert than I am, which sadly, even for the money, they are not. I had one pulled from our schedule and among the many apologies I received from the supervisors I found myself repeating a disgustingly PC phrase I learned when fired from a law firm last year, “She’s just not a good fit”, I said after a third phone call.

Think back to a time you have gotten out of bed to see why the t.v. was on in another room, or who was quietly closing doors or walking through the house. Usually it is a family member or roommate and all is well and calm. Betty forgets she was just up 15mins before and for hours will do this.

“It’s still light outside.”
“And it will be for the rest of the day, Betty. It’s morning.”

The most painful is when she forgets why we are here and asks for her husband. We relive his death in re-breaking the news.

Flipping her schedule has been hard. Something was lost in the days she stayed alone. Recalibrating her while orientating the care takers while taking care of B.

“Here is the vacuum, the cleaning products are in the usual places, under the sink, in the laundry room, under the bathroom sink as well. Please open the blinds last/first thing of your shift if it has not been done by the person before you. Do not give out any information. Do not small talk my husband. He is too polite to say he does not feel like being social. Do not worry about our laundry. If she asks to call her husband or where he is, the answer is he is gone but B and I are here, then please get us.”

Of all of this quiet chaos, I miss my husband. More than our house, more than my friends. I miss our privacy, laughing, our quiet time, lovemaking. I miss opening my eyes to feel rested. I miss when he didn’t remember his dreams. I miss when I could make everything better. But still there is no time to be sad, only more errands and appointments. Piling on the fatigue which seems to be never ending.


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