This is the first entry I ve written from my own home. Last night was the first time in two years that I ve slept in my own bed. I m having a decidedly mixed reaction to the present.
My mother moved into her assisted living unit on Thursday, an experience that lived up to all expectations. I haven t visited her yet, on the advice of the staff, but I ve talked twice to her on the telephone. She is extremely angry at me.
The staff tell me that she is doing quite well although not participating yet in activities and has interacted with the other residents on her unit. But it ll be a long while before she forgives me.
I ve gone over this and every other option in my head time and time again, and so I know that this is the best I can do for her, given her illness.
But I still feel guilty and sad. Guilty and sad, over and over again.
Christmas was tough, knowing what was going to happen afterwards but having to keep it to myself.
I told her on the day after Christmas that I d be moving home on Thursday, and that I had no intention of leaving her alone in the house, so I d made the arrangements for her at Garden Manor. She told me again that she would never leave her home, but softened when I described the place. I went to bed that night with a good feeling.
I spent most of the following day at the Manor, to see her new furniture delivered. (Her own bed was too large for the room, but buying new furniture worked out well. Her old furniture was pretty sad looking, and the new furniture could be delivered without her being disrupted.
) I ran to Target and bought a comforter and several other necessities, then returned and organized her half of the room. (She is sharing with another woman.) I left the place with a very positive feeling.
There are only 20 residents on her unit, and several of them were around, including a very flirtatious gentleman who kissed my hand. One of the CNA s assigned to my mother Donna showed me around and warned me about my mother s probable reaction to moving in. As I left I saw a group of residents sitting in the common area where a staff member was leading a discussion about George Burns.
The following morning moving day my mother rose and dressed and ate breakfast. I told her that I d be moving home that day and that she would be staying at Garden Manor. She meekly said, Okay, and I made eyes at my sister, amazed that it would all be so trouble-free.
But it wasn t. I should have swept her up at that very moment and taken her, but I gave her enough time to muster her resistance. About an hour later she told me that she d decided that she wasn t going to go.
She was going to get someone to live with her in her house. She would not leave her house.
I made the mistake of trying to convince her, and then of bullying her.
Neither tactic worked. She lay down on her bed in resignation and refused to go.
I sent a couple of desperate emails to the admissions lady at Garden Manor, and then went into my room and closed the door.
I had a bit of a cry, over the bleakness of the situation and over the prospect of spending another day in this state of emotional suspension. I was relying heavily on my plans, I was longing for some respite from my caregiving, and there seemed to be nothing I could do.
Finally I got up and went into my mother s room.
I found a pair of socks and shoes, and said: Here, let s put these on. She did, and I then got her coat. Come on, let s put this on, I said.
We ll just drive past the place, so you can see it. I m not moving in there, she said, putting on the coat. I don t have any make-up on, she fretted as she moved toward the door.
I nearly dragged my sister out of the den she had given up on getting my mother out and was watching TV. Get your coat we re going, I shouted as my mother and I passed.
I tried to be firm but not dictatorial.
We made the ten minute drive and parked at the front door of the Manor. While Liz helped my mother out of the car, I ran ahead and found the nurse manager, who took my mother s arm and walked her to the unit. My mother looked a little shell-shocked but also pleased at the attention.
We were met by Donna, who fussed over my mother as we showed her to her room. The unit is cheerful without being overwhelming: soft colors and calm lighting, with lots of room to walk around and a beautiful common room with comfortable chairs, a TV, a piano and a table for jigsaw puzzles. Its many windows overlook over the woods that surround the buildings of the facility.
I m not staying, my mother said, once she was sitting in the new upholstered swivel rocker in her room. She looked at me. How can you do this to me?
she said angrily.
This was the time to go. I told her I loved her and gave her a kiss Liz did the same.
Before we left, Donna gave me a big hug and told me that I was doing the right thing. We re going to take good care of her, she said.
In our rush to get out we hadn t even packed her clothes, so we now returned home and got them together, then went back to the Manor.
I brought them in and left them with the nurse, who told me that my mother was already sitting with some of the other residents in the common room, watching TV. Liz and I then drove back to my mother s house, where we drank wine and ate Christmas leftovers. The utter exhaustion took over then, and the bewilderment.
No matter how you plan, you just don t factor in the muddle of emotions that follow doing this. A certain relief, some grief at what you can and can t control, and sadness at having moved one step further toward what terrifies you.
So I m having some trouble organizing myself right now.
My house and yard are a mess, but I don t know what to do first. The downstairs toilet overflowed this morning, leaving a small lagoon in my kitchen, and this paralyzed me. I went to Home Depot and threw anything that looked even remotely useful into my cart, worrying all the time about getting home in time.
In time for what? Another habit to break. I then did some food shopping, trying to remember what I used to buy before I assumed my mother s eating habits.
So I m certainly not giving up the one-day-at-a-time mantra. This is the interim between the old way of caregiving and the new way. Out with the old and in with the new, as they say at this time of year.
Two days ago my cousin telephoned, and my mother answered. I listened to her side of their conversation and thought, Have I been dreaming? Is she really sick?
She handed the phone to me at one point. She sounds great, my cousin said to me.
Is this the woman I visited in the nursing home a little over a month ago?
The one who was acting out, who wanted to kill herself, who claimed she d been raped? Oh, we still see the disconnects (she kept referring to my sister as he earlier today), but I can deal with that. I can deal with her thinking that I m her sister, or expecting my father to come home for dinner, because those disconnects don t alter my mother s personality, her self.
She remains essentially herself, only caught in a time warp or subject to a misidentification. If I say to her, Daddy won t be here, tonight, she usually takes it in stride, even though she ll probably ask for him again tomorrow.
I m not trying to fool myself, here.
I ve seen enough of her during those other times, when her body seems to be inhabited by another self. When she s so agitated by God-knows-what that she can t get a grip. When she s so angry at me only the me she sees is a stranger.
I can tell by her eyes. I saw it in the hospital and again in the nursing home.
But she s been remarkably like the Mom I ve known all my life since she came home from the nursing home.
Despite all the reading I ve done, all the learning about Alzheimer s Disease, I catch myself at times like this wondering Am I making a mistake, moving her to assisted living? What if THAT makes her worse? Even though I ve actually experienced those spells when I ve been a stranger in her eyes, they now seem like dreams to me.
I know that this is what happens. One step forward, two steps back. Another step forward, leaving the caregiver in an emotional and practical muddle.
How awful is it to find yourself worrying because your mother seems to be better than usual? Should I be listening more to my heart, and not to my head?
This facet of caregiving just can t be measured: the role of the familial bond, for both the caregiver and her charge.
I couldn t do this, day in and day out, for a stranger (unlike many professional caregivers, God bless them) I get my motivation from my lifelong relationship with my mother. When the going gets tough I try to remember specific things she has done for me over the years I step back a bit from the present moment and try to put it in its proper perspective as just one of many, many moments that comprise our relationship. Doing that requires a rational decision I withdraw from the emotion of the present into something I ve created, an informed mindset I m determined to maintain.
I may be close to tears but I can usually hear the reasonable voice within me saying: Now, now, that s the Alzheimer s speaking take it with a grain of salt.
I think my point is that the swinging back and forth from head to heart, and back again, is tough. Knowing at any given moment whether to listen to reason or to emotion is difficult usually such decisions are nicely spaced throughout our lives.
But here in Alzheimer s Land they are not. When you are caring for a parent, there s a constant conversation going on between your dispassionate and your passionate selves. It s nice to have dialogue but sometimes I have to tune it out.
Sometimes I have to rest my head against The Divine and say, Okay, you take care of things for awhile. I just want to close my eyes
I m doing better since my last post, which is interesting to me, since nothing external has changed. Except, maybe, my hormones which I know are internal but I think fueled my anxiety last weekend.
So the medical researchers out there who are looking for a way to use that extra NIH grant money might consider studying the effects of menopause on middle-aged caregivers. There would be no shortage of participants, I imagine.
While on the subject of caregiving, I want to link to by Gail at .
She originally wrote it almost a year ago, but has revised it recently. I ve been thinking a lot lately about the psychology behind the advice I often hear given to caregivers basically, if we don t ask for help we shouldn t expect to get it. Can you imagine giving that advice to, say, someone with serious depression or cerebral palsy?
There are few absolutes beyond death and taxes, but one of them is that all caregivers want help. ALL OF US. Many of us are so immersed in the particular world of our care recipient that we are just too tired to write memos detailing the particular areas of need.
But some of us do. Some of us turn to blogs because the experience is so solitary and isolating, and we no longer know who to turn to. This will come as a surprise to the folks that Gail refers to in her post, but it s true.
I can speak best for adult children of infirm parents, those of us who might also be caring for our own children, or working outside the home. Most of us have had the experience of being sucked into the institutional care maw, whose processes serve mostly to perpetuate itself. Economy of scale is the prevailing principle, or, You re going to get this service whether you need it or not because it s easiest for us.
And you either take the package, or nothing at all.
An example is my mother s recent hospital stay for a pulmonary embolism. I will reluctantly admit that I appreciated the hospital s obvious brush with TQM (Total Quality Management) had made a real difference in the way we all were treated.
The institution was making an effort to reach out to its customers. But behind this customer service model lurked the same harried generalizations that underlie institutional efficiency.
It amazes me that hospital professionals still seem surprised when an elderly patient exhibits delerium.
I would imagine that most of the patients at any given time in a hospital are over the age of 60 shouldn t we be paying more attention to the psychological effects of hospitalization on these older patients? A number of years ago I saw my father go from lucid to delerious during the six or so hours we spent waiting in the emergency room before he was admitted for his spinal stenosis. Not once did a doctor or nurse mention that this is a relatively common occurrance for the elderly patient.
I had to research it on my own. This occurred about eight years ago, and the only improvement I can see is in the nature of the restraints that are used. Instead of being tied down, like my father was, my mother was discreetly alarmed in the nursing home.
But my point here is that when my mother exhibited delirium during her recent hospital stay, the social work staff were pressuring me to make long-term care plans based on that transient state. My sister and I might say to them, No, she isn t this agitated and delerious at home, and I sensed they thought we were refusing to face the truth. In addition, my mother s embolism weakened her as expected but the same staff were counseling us to ditch the plans for assisted living in favor of a nursing home, based on my mother s pre-rehab state.
She doesn t look like she can walk to me, one of the social workers snapped when I resisted her.
Maybe, since Alzheimer s Disease alone would not qualify her for Medicare benefits (ARE ANY MEMBERS OF THE LISTENING TO THIS??
) the staff were trying to find some disability that would keep her in rehab as long as possible. But isn t that just another sign of something wrong here?
So back to my original gripe about having, on top of everything, to ask for help or forever hold our peace: there s help and there s help.
Institutional help usually means orchestrating a spectrum of unaffiliated services or dealing with a monolithic institution (see also Mike s at , as well as at ). We have to figure out what s private pay and what s paid for by insurance, which usually induces apoplexy at the disconnect between Washington and the rest of America.
And why are our Congress members NOT looking at the fact that a nursing home costs upwards of $6000 a month: How many people of retirement age earn that much from their social security and pension?
How many of them can afford this, or assisted living, without impoverishing themselves? And what further toll does this take on the caregiver, who is by this time exhausted but still wants the best care for her charge? The caregiver must now enter the world of the housing market, on top of everything else, just to spend down.
Instead of coming up with an institutional solution for this disconnect, the burden is again placed on the person responsible the caregiver. As long as we rely on this tortured misuse of Medicaid we are not facing the primary problem of our responsibility to our most vulnerable citizens AND we are keeping a dirty little secret that is anything but, and which is a further insult to the unpaid caregivers whose collective role we don t really want to acknowledge.
I was just over at the Alzheimer s Association Caregiver Forum where someone had posted a message about the caregiver s stages.
I think I passed from one stage to the next on Sunday night, in a matter of minutes. I had a meltdown right in front of my mother (which I had tried never to do) and although it seemed to come out of the blue, these transitions never do.
It doesn t really matter what specifically precipitated it, because it could and would have been anything.
In an instant I knew I was going to start crying, in a way I hadn t cried since my Dustin died, so I went into my bedroom and lay down in the dark. But I can t close the bedroom door without arousing my mother s curiousity and I couldn t keep myself quiet, so she followed me in. I just let it all out, and she tried to comfort me and understand why I was so upset.
Of course I can t tell her that she is the reason I m sad.
Well, it s actually not that simple. The real problem is that I cannot get it into my head that I can t have a rational discussion with her about assisted living.
I tried again on Sunday afternoon, using the I d like to move back into my house tack. Of course you do, she said, as she always does. I can t leave you alone, I said.
She agreed with me on this until I suggested, once again, that she move somewhere where she d always have someone around, even when I m at work. I would never do that, she replied.
How do people do this?
Why does it have to be so awful? I know I sound like an 8-year-old, but I also feel like one. Old enough to know there s something dreadful afoot but too powerless to combat it.
And I think I reverted to my 8-year-old bag of tricks when I burst into tears later in the evening.
I ve read the most moving and heartbreaking personal accounts of how loving family members moved their moms and dads into assisted living or nursing homes. Nearly all of these accounts caused intense grief at first, even though most of the moves resulted in an improved situation for all.
Almost everyone I ve spoken to says they wish they had done it sooner, but I understand how one can believe that remaining in one s home is best. It s still excruciating.
Another issue is that I m into my third week away from work, and Thanksgiving is coming up in a couple of days it doesn t look like we ll be spending it with family, which disappoints me.
And Saturday was the seventh anniversary of my father s death. And my 13-year-old dog Lily is having increasing difficulty getting around am I just hanging on to her because I m afraid of losing one more part of my life?
So my mother is now following me around, worrying that I may be coming down with something and wanting to help, which is sweet but also accentuates how our relationship has changed.
Tonight she said good-night at least five times, each time telling me that she was going to leave her door open during the night in case I needed her. I feel my eyes well up, just writing that.
I was still very upset today, so I called the local Alzheimer s Association and talked to the social worker there, who sounds wonderful.
I made an appointment to talk with her, which I should have done much sooner than now. I have a med appointment tomorrow with my longterm psychiatrist and I ll ask him to refer me to a therapist. Can t do this much longer.
Today reminded me of why taking care of someone with Alzheimer s Disease becomes unbearable. In short: there is no smooth trajectory downward you wake up each morning with little expectation of what the day will bring. Things get horrible, then they suddenly improve for awhile.
Then they get worse for a day, then you coast along for awhile very manageably. This emotional rollercoaster is much harder to live with than I expected.
I had an appointment with our lawyer today, so I took the entire day off.
Eva was working a long shift, so I planned on spending time at my house in the morning and then heading off to the lawyer s office.
I m beginning to realize that the tenor of my mother s days is often set by me or my sister. Sometimes I do something with the expectation of relieving her anxiety, only to find my act provoking new and different behaviors.
So today I expected that my staying with my mother until Eva arrived would be reassuring, since she seems to be unusually fraught at being left alone. Before I got up I heard her go into the bathroom and then return to bed. When I brought her pills to her shortly afterwards she took them from me and attempted to take them without lifting her head off the pillow.
When I suggested that she sit up, she told me that she couldn t, because her leg was in great pain. I can t even walk anymore, she moaned.
This isn t the first time I ve heard her up and about sans cane only to moan, I can t walk minutes later.
I think I m realizing not so much that she s faking , but that her legs are what we English Lit majors call to her mental state. As the legs go, so goes the day.
We have had her legs MRI d and ultrasounded and xrayed, and the doctor s conclusion was that there is most likely arthritis at play an idea my mother sometimes embraces and other times denounces.
I mention this because I don t want to seem indifferent to her pain. I m now at a point where I must be very selective about my battles.
Today I wondered whether my staying home hadn t set my mother on a slightly different course from her usual morning confusion and anxiety on a somewhat more self-conscious tangent.
She eventually got up and wandered out to the kitchen again, without her cane then sat in the living room for awhile. I delivered my gentle sermon about how staying in bed for long spells might contribute to her leg problems, and as soon as I turned my back she was back in bed.
Eva arrived shortly afterwards.
Once again, my mother got up and shuffled into the living room. I don t think I ll go today, she said weakly.
Ahhh.
I d forgotten that she wakes up every morning believing that she has to be at work , and so I responded, You don t have to go today, which perked her up. Can Eva stay? she asked.
Sure, I said, feeling like the good fairy.
By the time I got to my house I was both distracted and tired. Instead of doing the odd jobs I d planned, I watched Walk the Line on HBO, which took me out of my world for a couple of hours.
Look at Johnny Cash s problems and I think I have it rough? When I finally left my house I was humming Ring of Fire.
My visit with the lawyer was a good one.
She backed up a couple of decisions I d made and offered me a couple of reassuring financial alternatives. I was getting tired of people giving me advice, or bemoaning my parents failure to plan realistically. My father did what he thought sound, back in the seventies, and didn t revisit his plans.
As I talk to others my age, I realize that this situation is not uncommon. My father s generation who were coming of age during the New Deal expected that government would always work the way it did under Roosevelt and take care of its citizens. How sad that many of this generation is now aged and frail at a time when the federal government is handing off such responsibility to the states like a hot potato.
When trickle down economics is considered the 11th commandment.
But back to my day. When I left the lawyer s office, I turned my cell phone on to find that I had two messages: one from Eva, asking me to come home, my mother was having shortness of breath; the other from my sister, with basically the same information.
When I got home my mother was sitting on the couch with Liz, looking very wan. She said she was feeling better, but had quite a bit of trouble describing what had occurred. I tried not to interrogate her, I asked my questions slowly and simply, but all I determined was that there was no pain.
So here is where the caregiver has to remind herself that she will be the one to make any further decision. I heard myself asking my mother: Do you want to go to the doctor? but realized that this would go nowhere.
I should have made a decision let s sit awhile and see how you feel and presented it to her. I did this, eventually, but by then the seed was sown. A short time later my mother began asking me to call the doctor to ask for the test results.
What test results? Liz demanded, as I clenched my teeth. My mother managed a halting account of having gone somewhere to have tests done, and they should be ready now, so would we please call?
By this time I was regretting having taken the day off in the first place. If I d gone in at my usual time, my mother would probably have had her anxiety, which would have worn off by afternoon. I had bartered the anxiety for something else but I don t know what and my mother was still having a serious problem stringing a sentence together in the evening.
As we watched the Mass, she suddenly said: They never used to do that in school, all the children Come up to me and say, It s easter. I was totally bewildered and so I said, Do they do this now? Oh, yes, especially little Eva.
It hit me that she was referring to watching the Mass at noon, instead of at seven pm. Eva must be starting to suggest that they watch it early. So now you watch it at noon?
I asked by way of testing my hunch. Oh, yes, she said happily.
So this was my day and thank God it s a Friday, because I can sleep late tomorrow.
I have no idea what the day will bring. I ve begun several posts over the past week, and then found myself petering out very quickly. Each day begins on the wrong note as my mother becomes more and more anxious at being alone.
She can no longer evaluate the situation and tell herself that Eva will be arriving at some point her anxiety feeds on her confusion. She believes each day that she is supposed to go to work, even though I assure her that she has no such obligation. There are days when I resort to telling her that I will call in sick for her, which calms her down temporarily, until the next day.
So I imagine that she wakes up to the classic bad dream, where she is stranded somewhere without any assistance or any means to get where she needs to be. And she can t identify either place.
If my sister would step out of her fog and come over in the morning, we could avoid this routine.
Or mitigate it. Or maybe not. I m angry because my sister has the free time and yet she seems only to visit my mother when someone else is there.
So again and again she shows up while Eva is on duty and then complains to me, Why are we paying her? I m usually at work when she calls and complains, so I have to bite my tongue in order to maintain workplace decorum. I ve asked her several times to come over earlier, after I leave for work and before Eva arrives, just so my mother won t have to get up to an empty house.
She decided last week that she was going to start doing this, a resolution that lasted two days. Now she s back to the evasiveness. My sister shows up when she shows up, that s that.
I have to get it through my head that I cannot rely on her, I can t let her get to me. It s just so hard to keep from imagining how things could be a bit better for my mother.
I think Liz is afraid of the Alzheimer s.
She projects this fear onto Eva, which according to her is why she spends more time with my mother when Eva is there. She claims that she can tell how nervous Eva is at being alone with my mother, how bothered by her illness she is. So here we are.
I probably should be paying Eva double-time, for being with my sister as well as with my mother.
The fact is, I just do not understand how someone can take this route. I know I should have some sympathy, but in my eyes, Liz is making an already tough situation extra tough by her refusal to face reality.
If she s scared well so am I. First, admit it. Second, arm yourself with knowledge and resolve to remind yourself that it isn t as much your own ordeal as it is our mother s ordeal.
I m going to get through this, but this is the final chapter of my mother s life, and I refuse to take any measure primarily for my own convenience. (Well, maybe I ll still take little ones, like using paper plates and bringing home take-out more than I ought to )
If if sounds like I m trying to convince myself, maybe I am. Now that we are in the nebulous, neither-here-nor-there zone, I m trying to reorient myself.
The truth is, there are more and more moments when I close my eyes and imagine myself back in my own house, alone, solitary. I ll adopt another dog and sleep in my own bed and go back to eating the food I prefer and be able to go out without arranging for a sitter and wake up in the morning to peace. I won t have to argue with my mother just to get her to wash her hair or remember her cane or eat her vegetables.
This is where I am, right now. Very preoccupied, very angry, very tired. As tough as it is, I need to push things this far, just to prove to myself that this arrangement is no longer working.
My mother is depressed and anxious, and even though she dearly doesn t want to move, I m beginning to believe that a new, livelier setting might give her a little positive stimulation. And I m realizing that she s attached more to the routine than she is to any of its elements. Only over the past couple of months have I understood what is meant by caregiver s burnout.
Waking up each morning with a sick feeling in the pit of my stomach, going to bed at night with a head full of circling obligations and regrets. Catching myself in the middle of the rare pleasant experience and thinking, Whoa. Not so fast don t get TOO relaxed Envying the person ahead of me in line at Target because I imagine that she lives the kind of trouble-free life I don t have.
What s funny about the last statement is my knowing that no one actually has such a life a couple of months ago I was waiting in line at Dunkin Donuts and ahead of me was a man I d gone to grammar school with, many years before. I almost spoke to him but before I got up the nerve, he d gotten his coffee and was gone. And then this past week I saw his mother s obituary in the local paper: she had had Alzheimer s Disease.
But part of the power of such intense, jagged, fear-ridden experiences as caring for someone with AD is the black-hole effect. Everything around you gets sucked in, everything else is somehow related to your troubles and assumes their nature. Even the relatively minor headaches the car muffler coming loose or losing the brand new book of stamps you just bought become And now THIS!
! moments. Reverberations of the primary heartbreak as it pounds away at you.
Months ago I d bought tickets to see Bob Dylan perform locally. As the concert approached I became anxious I couldn t pull myself out of my tight little orbit. First of all, I d have to arrange for someone to spend the evening with my mother otherwise, I d never be able to relax.
And then I d have to take responsibility for my friends evening if I bailed out or had to leave early, I d be spoiling the experience for them, too. Then I realized that the worst-case scenario would be if I actually began to have a good time and then had to face the wake-up call of reality. So I sold the tickets.
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