Mom’s Alzheimer’s: Reflections on my Non-Decision

Originally posted June 10, 2013.

Today I’m participating in Kathy Bender’s of Bereaved and Blessed “Time-Warp Tuesday” exercise. The idea is to reflect on a past blog post. This month’s theme is Decisions.


Beginning to process this enormous event

The event I decided to reflect on is my mom’s Alzheimer’s disease and the post I wrote about it last year: Taking Her Dog Away.


I wrote about the weeks leading up to my realization that my mother really couldn’t care for herself anymore and needed to be placed in an assisted living facility. At the time, I didn’t so much write about having to place her in a facility so much as the final emotional straw of having to take her little dog away from her. I haven’t been able to write about my feelings about this all year. I was so angry and sad, there were no words, no creative art about it either. Until a few weeks ago, I wrote this poem, Footie, I am 6. I seem to finally be able to put some images, emotions and words together.


The decision to place her in a facility was not so much a decision as a non-decision, a result of reactive measures, not so much proactive planning. The months preceding were an emotionally charged mess of strange happenings, phone calls from people in the community, confusing actions and my own (and my siblings’) incredibly strong denial of what now seems obvious.


The third parent


For the past twenty years, I lived the closest to my mom and she was always helping with my family. She was like a third parent to my son. She lived 20 minutes from me and often drove over to pick him up when he was little and babysit for him. She loved having him at her condo. He helped her plant daffodils. She laughed as he said, “Point up,” as he really knew what to do…I had told him to do so when we planted at our house.


And the years passed,. We moved about an hour away. I insisted she move by us as well. I worried about her being so far away, what if something happened? She was about 80 when we moved. She eventually came to live by us, about 20 minutes away again. Life was ok.


Signs of forgetting


I started noticing she was getting forgetful a few years ago. But she was still doing fine, living on her own. She wanted to. She insisted on her privacy and independence. She was paying her bills, keeping the place clean, walking her dog.


Time passed. About three years ago, her doctor called me. He wanted to see me. I called my brother. He wanted us to hear what he had to say. He recommended that she go into assisted living, as he felt it was indicated. Of course, a long, drawn out sequence of events went on and she just wouldn’t go, she felt she wasn’t ready. It wasn’t time for anyone to really step in yet. The doctor prescribed medication, I tried to help her remember to take it, but I wasn’t too effective. Notes, medication holders…nothing much took.


Too many chickens in the fridge


Two years more go by, I go to her house. I open the refrigerator door. There is so much food in there, I’m puzzled. There are six ready made chickens….and just alot of stuff. I say, “Mom, what’s up?” She gets a funny look like she’s done something bad and she doesn’t answer. So, I get a garbage bag and clean it out.


A week later, I go back again. Same fridge thing. I take a good look around the house. I kinda realize it seems a bit dingy. And I notice there are an awful lot of papers piled up around. I don’t remember that before (I don’t think?) And my mom herself looks a bit shabby. Hmm, is something up here? But what? My goodness, I’m a psychotherapist and I’m just not sure. I work with younger families, I’ve really never seen this. I email my siblings…there seems to be something wrong….no one says much; we’re all suspended in disbelief.


Anyway – in the few weeks after that, I get phone calls from various people: her veterinarian, my veterinarian, the people at her condo complex…all very compassionate, very kind. They say, she’s not herself, we know it’s not her. And I’m stunned. What to do? How to get her out of her house? She fights me whenever I bring it up. How to take away her car? She fights about that.


One day, I get a call at work. I really need to go get her. But I am at work, my day just started. Back-to-back appointments from 2 pm through 9 pm. I was so flustered.


Folks, dream on, I have no staff. The insurance reimbursement for mental health work is not a living wage for northern New Jersey. How was I to call everyone and cancel? I was lucky to be able to get in touch with my son to pick her up and take her to our home. I was lucky he was of driving age and he had a car.


Dementia is a real disease with sad and scary symptoms


At my home, six weeks of a long nightmare began. She didn’t sleep. At night, I had to move all the food in the refrigerator to the downstairs refrigerator to hide it, otherwise it would all disappear overnight. We think she would stuff it down her poor little dog’s throat. We just don’t know. Once night eight pieces of chicken were gone overnight. She constantly tried to go home. She tried to leave at midnight. She yelled at me, tried to scratch me. None of us were sleeping. She’d wander around at night, banging doors and stomping around.


The next morning she’d have no recall of the night before and she’d be apologetic. It was so sad. I called her doctor for help over the first weekend. Medication? A primary care physician with alot of elderly patients, he was so backed up that he didn’t get back to me until late Sunday afternoon, he was exhausted. On a Sunday, he prescribed some meds over the phone and I ran to my pharmacy. Hers was closed on Sundays. I didn’t have any of her insurance information. But that pharmacist found her in the Medicare database, somehow. He was so kind and so empathetic. But she wouldn’t take the medication. She insisted I was trying to poison her. I keep sneaking some into ice cream, so she would calm down and sleep and we could all sleep.


I kept working, my husband kept working, my son was in school. What choice was there? I prayed she wouldn’t run away while I was at work. It was so hard to believe that the illness was really there. Often she seemed much like herself, I saw my mom there, often I didn’t see what they were talking about…surely if she had the right medication she’d be fine to live in her condo again. We went for walks with the dogs, she seemed more tired than she used to be.


Next, the interview at the assisted living place. We had gone there two years before, so they knew us. She fought to stay in her condo, but we found she wasn’t paying her bills properly, the activities of daily living were going downhill. I took away her car keys. My brother took control of the bank accounts. My sister sneaked her check book and credit cards out of her wallet.


False cheer – don’t look behind the curtain


At the interview, the staff doesn’t really say anything; no one talks about the elephant in the room. They’re nice, but it’s so restrained. No offer of counseling assistance for the family, no offer of counseling assistance for my mom in her transition. Just lots of smiles and cheery can-do attitude. (Ha -payback – reminded me of myself when I worked at the Cancer Center.) And we’re all obviously in distress. Being a therapist, I’m expecting transition services, supportive counseling, some acknowledgment of this loss, of the grief we’re all sunk in.


No, nothing like that. The social worker is really more in a salesperson role. It’s plain old weird. Everyone acts as if everything is all ok. A woman is losing her independence and let’s just dance right through this. A woman losing all of her husband’s and her hard-earned life savings to this place and let’s not talk about that either. There is so much denial over what is going on I feel like I’m crazy for expecting some sort of acknowledgment. The cognitive dissonance stuns me. I wonder why I don’t think this is normal.


Move Number One


Next, I arrange for the movers to come. Thank goodness my sister arrives from Florida to help. We go with mom to her condo to consolidate her furniture into one small room. I don’t think I could’ve coped with this alone; it was so healing to have my sister there to cope with this saddest of days. Mom saves her best stuff. It’s pretty ok. She keeps saying she’ll be ok if she can keep her dog. The move goes all right. The movers have done this before, they’re very kind. They tell lots of jokes and pay attention to my mom. I give them tips.

We move in and I think it’s gonna be ok, but it’s short -lived. My mom keeps leaving the premises unannounced. Once, they found her two miles away, sort of running. Last year, she was 91, but in great physical shape. I thought it was weird that they didn’t lock the doors when there are mentally incompetent people living there.


Guilt, shame, confusion – $3500 a month and YOU should be here


Next, the nightmare of the staff calls. The staff calls me at all hours of the day and night, nastily complaining about my mother. I am totally confused. The place costs $3500 a month. No one talks to her, no one coaches her on how to adjust. No one offers to help me with this transition, this immense responsibility. They are downright nasty. They act ass if she was doing this on purpose, as if she doesn’t have a disease. I am very confused. What are we paying $3500 a month for???


I realize they are scared shit about their liability and their licenses, that’s all. If something happens to her, they’re liable, that’s all they care about.


They tell me I should be there to come and stay with her at night, I should be there to take care of her. I am really shaken up.


On top of the grief and guilt I already feel, I am very ashamed. I am also confused, I have three siblings, but the staff calls me to say I should be there. No one else is being badgered like this. Believe me, they’re nasty about it.


$3500 a month you say? I am shaken up.


What are we paying you for???? I ask. I’m pissed.


Fucking. Lock. The. Door. I say.


Why is the front door unlocked at night at a facility such as this? WTF???


I am totally exhausted, emotionally and physically. I am still running my own business and still have my family. I get calls in the middle of sessions, I am 40 minutes away, with a full client schedule. I’m supposed to be writing a book with some co-authors. I’m supposed to be working at my business. Oh yeah, and being a mother to a teenager. I drop out of the book writing effort; I can’t keep up my obligations to the other people.


I am paralyzed by the depth of guilt, shame, anger and confusion I feel. Is this a manipulative tactic they use to get people to comply?


Try to imagine the deep pit of confusion and guilt that opens up when when I hear the words YOU are supposed to be here to take care of her. YOU come. That is actually what the head nurse said to me. Mind you, we are paying $3500 a month.


Taking her dog away


Next the showdown over her dog. You can read about that here.

We are all devastated when we are told we must remove her dog. They tell me by having the receptionist tell me on the phone I have to come get the dog. Everyone seems to be angry at us and my mom. She is 91 and she is ill.


Alzheimer’s- All alone in her room


My mother cries every day in her room. She has our phone numbers, but can’t figure out how to call us. I’m trying to work. I run out there as much as I can. No one goes to talk to her. They leave a woman who was just ripped from her home, her car, her independence and finally, her dog. They leave her to cry. I am shocked at the callousness. I am so confused that there is literally no one for her, at $3500 a month.


I call the social worker, and ask what other services are there? At my urging, they put together a plan that includes visits from a psychologist and memory care from a speech therapist. If I hadn’t asked no one would’ve lifted a finger. The professional visits seem to help her, and I bring the dog to visit often.


This scenario goes on for two weeks. My siblings and I are confused. No one is suggesting what we do as an alternative. My brother calls her doctor and he suggests a psychiatric evaluation. But the psychiatrist only comes once a month and we just missed him. But there is a psychiatric nurse who works at her doctors, she can come in two weeks.


Lock her down or I will


I call her and she kindly says she’ll fit my mom in ASAP. She sees her on a Friday. I talk to her I guess later that day; she says “If you don’t put her in a lock-down or have a 24 hour aide, I will.“ Well, I am speechless, I hang up on her, and just sob. Call my brother. And then we have to search for another type of facility. It’s now been 14 weeks of chaos. I am exhausted. We are all exhausted.


My mother has gone from living on her own to having to either be locked up or with a 24 hours aide in a few weeks.


These such facilities are super-expensive. We are now w talking a mind-blowing $6,000 a month. I’m flipping out at the price-tag. (Now, but not then, I’m numb to cost of healthcare in the US.


Ok – so my brother does some research. He goes to one place, and I go to see the sister facility of the place where my mom is at. The place where she is, has a very small lock-down unit. So, it’s inappropriate for her, as she can still walk three miles; she is restless. They say, go see the sister facility; it has a bigger lock-down unit, she can walk around.


Alzheimer’s Lock-down reality


Whoa – the place stinks to high heaven. And this is a nice place, rated well. What are the poorly rated places like? The aides know what it’s all about; they whisper, there aren’t enough aides to take care of the Medicaid residents. The residents aren’t changed often enough.


I look at the residents, most are in the later stages of dementia; their egos have left them, they sit and stare vacantly. But one, looking more youthful than the others, is still ego-aware. She notices me as I walk in to view the place. She is aware of her surroundings. She deliberately meets my eyes. In that look I see envy, anger and the desire to be someone else, actually to be me. It’s frightening.


We step out of the lock down and I start to cry. The staff member tries to say some positive things, but then sighs and kinda just sits there. I’m like, what’s that smell? She doesn’t answer me, looks away.


24 Hour Care from an aide


Next suggestion: the facility says, well, also talk to some home health aide agencies. I call an agency. I’m hysterically crying. I’m exhausted. The case manager is the first person to talk to us in an expansive way, offering some insight and practical solutions. She explains to me our options, she is knowledgeable, forthcoming and professional. She says she’ll do an assessment of my mom’s situation the next day. At the facility’s request, she gets a temporary full-time aide in with my mom.


She gets back to me within a day. She says she doesn’t want to tell us what to do, and she can recommend a professional elder-care counselor; she offers to call her for us.


The case manager gets back to me quickly and says the counselor doesn’t want us to spend our money on consulting with her; the situation is obvious. She says my mom is far too well to be in a lock-down but needs a 24 hour aide.


My siblings and I, after much email deliberation, weigh the costs, the quality of life factors and how much we (translate, I) will need to be present in each situation.


We decide on a 24 hour aide in a small apartment attached to the present facility.


Why stay at that seemingly unfriendly place? Well, they only have a two – three year buy-in requirement. Meaning that you will then be eligible for one of their Medicaid beds after you dump your life savings into their facility. There really aren’t any better ones; the ones that appear to be better require an outright $300,000 buy in. It is what it is.


It’s in her neighborhood, she can walk the same routes, go to the Shop-Rite with the facility bus. Many people stop & talk to her on her walks….


Move Number Two


I call the movers again. The owner is so nice, he hears the tears in my voice and immediately fits us in, although they are booked all week. Same guys come. They’ve done moves within the facility before, as people move from care level to care level. My son and his friends come to help. They add some lightness to the situation. Nothing like 17 year old boys in an assisted living facility. To them, there’s plenty of comedy around. But my mom keeps asking about her dog…Can’t I have him back? Even the boys eventually ask me, Why can’t she have her dog?


So, you think this situation is finally stabilized? Of course not. It’s a story about dementia and elder-care in the US, folks.


I go on vacation; we had a vacation already paid for and booked in New Hampshire, like we always do. I really need to be away from the sadness.


Musical aides


Turns out the aide who was with my mom was perfectly fine, she just wasn’t certified in NJ, only NY. So, the case manager books another woman for my mom in her place. My mom liked to take three long walks a day, but not everyone wants to accommodate this.


My mom would keep leaving the facility when the aide was in the bathroom. Again, the facility is not happy, the aide is not happy. All are upset. All are calling me again, I refer them to my brother in NJ. My brother is ill-equipped to deal with the emotional zeitgeist of female aides and my mom. He gets stressed and sends nutty texts and emails.


The case manager swaps out so many aides we are six women down, my 91-year-old mom still standing.


Keeping track of the numerous time sheets, dates and payments is no small task.

Finally a marriage – the right aide


Anyway, finally the right one comes along after I get back from vacation and after about another week at work, she has arrived.


She is calm, mature, competent and positive about my mom’s strengths. She urges me to make a doctor’s appointment to get her medications straightened out. With the correct meds, my mom is a lot calmer.


$4000 a month, my own health, the middle class is screwed, thank you very much deregulation and Wall Street


By the fall, my vertigo has come back with a vengeance. I had an accident the year before and it is recurrent, but I’d been feeling very well for many months. But it is aggravated by stress and muscle tension. I’ve not had the time to attend to the physical therapy and exercise I need to do to keep myself well.


I’m feeling kinda dizzy the day we go to see Montclair State with my son. By the time we get there, I am in full-blown vertigo. I’m paralyzed and vomiting in the admissions office. Fun. Eventually I agree to let the paramedics take me to the emergency room. I start my struggle with vertigo again.


With my mom’s living conditions stable, I’ve been able to get back into physical therapy and do my exercise program again. I’m better again now, nine months later.


A Year Later


A year later after we moved her, her condition is worsening.


There has been a rate hike at the facility and at the agency. Writing checks for over $4000 a month is stressful in a way I hadn’t anticipated.


We put her condo on the market, after I orchestrated and did most of the clean-up work.


It’s pretty sad to clean out your mom’s place. My family worried about me.

It’s down $78,0000 from 11 years ago, Thank you very much deregulation and Wall Street. The middle class in the US is left to scramble.


Got your back, Wall Street and the 1%. Not.


Decisions


So this was supposed to be about decisions. When I wrote the first post, I was in turmoil.


After a year, I’ve come to an uneasy truce with my choice.


The title of this is Reflections on my Non-Decision.


Processing this event has helped me realize it is not a non-decision, I did make an adult decision, however uneasy I still feel about it.


My struggle is, why can’t I have her live with me? My siblings say, you will get ill. I think about it all the time and I want to take care of her.


Caring for her would mean that I would give up my life. I’d give up my practice. I’d stop doing my life.


I go around and around about this, and I have made an uneasy truce with the fact that I don’t want to give my life. The guilt doesn’t go away, it just lessens.

I have her at the house over the weekends sometimes, with our aide (she is wonderful). It is fun yet also stressful. I always think, can I do this full-time?


Dementia is an awful disease. The person who develops it has an awareness of it all the while it is taking away her sense of self. I wrote a poem about it here.


I grieve every time I see my mom, she is slowly fading away. It’s harder and harder to have a good time; she’s disappearing before our eyes. And yet sometimes there is a good day and she is there.


Dementia has an ugly and unwanted face.


What lies ahead?


The assisted living facility is an ok place, as long as you fit in to their version of care. It’s clean, the food is good. It is expensive.


Hushed, we worry, the money will run out; how can we stabilize her healthcare costs?


There is no answer.


It is not a reasonable amount of money; none of us make enough money to plug that hole.


Life feels different now.


I used to feel safe and comfortable. I no longer do. I now feel life is cruel and unpredictable. I mean, I always knew it was. I have weathered other storms in my life. But this knowledge is in my bones.


What happens when the money runs out?


The list of things Medicare doesn’t cover is long.


Isn’t this invisible disability as real as one that physically cripples?


What do you think your decision would be?