Loss

"Loss"

My grandmother passed away Monday evening.

I was at work when I got the call, from the hospice nurse. My grandmother had been on hospice since May 2015. My grandfather passed away in March 2016, also on hospice. They were in a care home I selected after my grandmother was unable to live in independent living in October. She had been too weak to walk and eventually stopped walking, losing the ability in her legs.

I won't go into too much detail about the nightmare of worry I went through during this time. My family and I have been dealing with this together and I am finally coming face to face with this reality.

* * *

I stood in the sunlight with book in hand, moving every so often when the sun's light dimmed behind a building. In San Francisco, sunlight is scarce in the afternoon.

I wondered suddenly about the purpose of my life.

* * *

For years, my grandparents have been the center of my life, as if they were my parents. They raised me and took care of me when no one else could. My grandmother fought for guardianship of me when my abusive mother's actions led me to be taken away into state custody. My grandfather was always there for my grandmother during this time. I knew no one else.

As I got older, so did they, and they suffered the terrible ailments of age: broken bones, pain, multiple hospital trips, medication for high-blood pressure, loss of body functions, etc. The burden of caregiver was put upon me and I learned to manage a household at age 17. I was already signing checks, was made Power of Attorney, and paying bills from their account by age 21. When I had been 16 my grandmother wanted desperately for me to get my license, because not only did this free her of being my school activity chauffeur, it also provided emergency transportation for when she needed to go to the hospital, which was very frequent. The hospital people knew my grandmother and I by name.

My grandfather also had problems and I was there for him too.

The sense of "life coming to an end" for my grandparents was always close to my thoughts. "What if they die?" was the frequent question and grandma always assured me there was money and family to handle it all.

Eventually, I moved out (multiple times) and tried, unsuccessfully, to start my own life as an adult. I never had a full time job at this time, though I often was a full-time college student. After age 23 though, I had to get my own life insurance and was no longer a dependent status. I was still paying my bills with their money.

Never having a full time job made things difficult for me and made things next to impossible for rent, which also contributed to my homeless situation. I never had a steady relationship with anyone and never moved in with a boyfriend/significant other. I did not learn the early lessons people my age learned: moving out, paying your own bills, starting a family, etc. I promised my grandmother at age 12 I would never get pregnant as a teen and this led to me renewing my own vow never to have children.

There were always emergencies. When I wasn't there to help grandma, she had to rely on a kindly neighbor to take her to the hospital. This made me feel very guilty. Grandma assured me I could have my own life but I was never convinced.

Then Kaiser, their HMO health insurance given to them by grandpa's county retirement (which grandma helped write up 50 years ago), threatened to kick them off permanently if they did not move back into the area. We had already sold the house but the letter came all of a sudden, as I had just recently picked out a house for us to rent. I helped move them again to an apartment in the bay area while I stayed to finish the pro-longed rent that the property manager had tricked my grandmother into.

When it came time for me, a single unemployed female, to find a place to live, it was nearly impossible. I suffered greatly as a result.

There came the recent time I had to live with grandma and grandpa in their independent living residence (a 14 day limit) while I was homeless, after a relative told me to leave. This was right before grandma went on hospice.

I have faced many trials since then.

* * *

I imagine this must be what caregivers for family feel, when their loved one has finally passed away. That sense of loss, loss of purpose, loss of meaning, when you feel as though you have lived solely for the purpose of taking care of the person who has just died.

Grandma always told me, "What would I do without you?", "You're the only one I live for.", etc. Words like these have a powerful effect on a person who has had no purpose in life besides feeling responsible for the grandparents who rescued them from abuse.

I felt always that I never had my own life.

When I finally got a foothold of some independent existence: getting a job, being homeless, moving to San Francisco, quitting that job, wandering aimlessly until the next job, breaking up with a long-term boyfriend...

disaster struck.

In October, on the 17th, I found out grandma could not stay at her residence alone. That she needed care. We eventually paid about $20,000 for private care through an agency related to hospice. My concerns with those people shall not be mentioned here, other than that, I had to quit the care due to financial constraints and that I worked as hard as I could to give my grandmother the care she needed.

I had considered moving in with them, as a full-time caregiver. This meant I would give up my place in San Francisco that I had worked to hard to find. That I would quit my job, the only job that was giving me full-time work hours and lose any future money. It meant giving up my entire life with the great possibility of being homeless again.

I cried and cried at the loss of my freedom, at the loss of my life. What could I do?

After talking to family, it occurred to me that I could pay myself from my grandparent's money (we had more money at that time). It also dawned on me that I was alone, that no one else could really help me. This was a lot for me to face.

Reality and a sort of selfishness brought me to my senses. There was no way I could take care of my grandmother and if my grandfather got worse (which was more than likely), I could not do it on my own. Even with the hired help that cost over $500 a day, it was a struggle. Grandma needed round-the-clock care, diaper changing and was pretty much bed-ridden, not being able to get out of bed by this time. It was too much for me.

I had to move grandma. Now there was a deadline, as we had given the independent living residence 30 day notice. Problem was, there was no vacancy in a care home for grandma. I frantically searched the internet and called over a dozen places to no avail... finally settling for a referral agency (which the care homes pay). Grandma made me swear never to put them in a nursing home. I would find out later what horrible places these were.

Finally, we managed to find a place. But the problems continued...

* * *

Even now, I have trouble using the singular "I". I have always said, "we", my grandparents and I, as if we were one unit. My boss asked me when I told him my troubles, "Who's this 'we' you're talking about? I thought you were on your own?" Even now I say, my grandparents and I, the only family I've known.

I have other family members but I am not close with them. It's my own fault, I suppose. I am not one who communicates well with others who can't understand how I feel. It's been this way since I was a child.

There is also the matter of being stuck with their problems. Since I was a teenager, I have been aware of other people's problems. My grandmother always had to deal with their drama, and later, so did I. I had enough of my own problems at this time and was reluctant to take on anyone else's. I also felt isolated and betrayed after being homeless, since oddly enough when people offered to help, they did not. When things were going well I had to deal with other's problems. When things weren't going well for me, no one was there.

I have now learned not to rely on others. I have learned never to expect anything from anyone else.

I am now empty.

* * *

I stood there with my book in hand, sunlight warming my back, wondering about my life.

I had the strangest superstition that as long as I had to care for my grandparents, nothing would happen to me. Perhaps God only allowed me to live because I was taking care of my grandparents. Surely, I thought in my selfishness, God won't punish me as long as I take care of my grandparents. I always thought this when in a plane, going across the oceans to the other continents.

Now it seems I may die at any time.

I came close to killing myself before. The trials I faced before becoming homeless were great. The only thing that kept me from taking my own life, was the thought of my grandmother. I was the only one she had.

Now I have nothing left to live for, besides myself.

All that time of worry (making me want to end my own life), is gone. Now I don't care.

* * *

What am I now?

Sacrifice

Right now I'm having to give up my life to take care of my dying grandmother and grandfather who are on hospice. For some reason, my grandmother decided to die before grandpa, so she wouldn't have that responsibility but maybe that's a good thing since grandpa makes more money on retirement than she does.

For two years they've been in an independent living facility but now they must move because they need additional care that can't be provided where they're at. Where to? I have no idea. I signed up for CalRegistry with a list of boarding houses and dubious results. Most are for-profit and range $4,000+ for two people (plus extra costs of deposits, etc.).

As of now my grandmother receives 24-hour care that will cost $15,000+ a month. We signed up for this on Saturday, October 17th, 2015. There's also a $1,584 deposit and a clause that states if you hire one of the workers outside the company, you're liable for $5,000. I put this on my credit card and had to rent a car for about a week, since taking public transportation would be a 6 hour commute from San Francisco to Antioch.

There's not much I can do in this situation that keeps getting worse everyday. I've never seen my grandmother this bad. For most of my life, she's taken care of me. She got guardianship of me when I was 11-years-old after a several year battle with courts who wouldn't let her take care of me after my drunk mother abused me. My father was never in the picture.

As a teenager, I've seen her health failing and went through her ordeal of a broken leg, and a broken hip, which woke me up to the realization that she was an old woman and that I had to take on more responsibility. Later on, I had to manage the household bills, finances and more responsibilities.

I was made Power of Attorney when it was obvious my uncle didn't want any responsibility for his mother. My aunt got Alzheimers and couldn't be in this role and was later removed as Trustee for the living trust. Another distant relative had helped us but was removed when they started arguing about money and how my grandmother was spending it. Before I knew it, I was made Trustee. I was the only one helping them at this point.

I never had any long term goals in life because I always had to prepare for the moment when I would have to take over when grandma and grandpa got ill. I never married, never had children and only briefly got a place of my own before I had to give it up again. I was never truly independent from my grandma.

The family was only sparsely involved and they have problems of their own. I can't rely on them, as it has been proven time and time again that they're not reliable.

I had a nervous breakdown and tried to commit an act that would be considered suicide. Because of the actions of others, I had to suffer an ordeal that took away my housing and ultimately my freedom. My father helped me through this briefly, after having surgery for a heart attack he suffered while under stress from his job and his girlfriend and her problems. He wasn't prepared to help me and didn't know how to handle the situation, thus leaving me in the hospital until I threatened to call a lawyer to get out. I stayed with him and his girlfriend briefly, along with the girlfriend's granddaughter, but it was obvious I wasn't wanted there. As a result, my father and I don't speak to each other.

I stayed with another family member for several months while I tried to recover and eventually got a job that I would have to quit because of their bad temporary management. What I did not know was that this family member, (husband of aunt with Alzheimers) was also suffering from dementia. Nobody had bothered to tell me this. One day he said to me, "I'd like my room back" and then I had to scramble to find a place to stay so I wouldn't be on the street. I ended up staying with my grandma and grandpa at their place until I luckily found a place to live in an SRO (Single Resident Occupancy) hotel in San Francisco.

I have savings from when grandma and grandpa told me to save money, "for when you're on your own". Well, this was it, I was finally having to survive on my own, without help from anyone.

I kept my job for a few more weeks but then had to quit due to the stress of "psychological bullying" and sabotage. I didn't know how hard it would be to find another job. I hunted Craig's List for a month or more and interviewed for jobs as a night-shift worker at a hostel and hotel since I had no Master's Degree and no "work experience". I did one stint for one day delivering some drinks around a neighborhood but this didn't work out. It was only by luck that I found another job.

Currently, I have had to take leave from my job and I don't know when this will be sorted out.

It's up to me to do everything. No one has been helping me. My family, for the most part don't want to be involved. My brother has a problem with his father that he's dealing with and his own drama. My aunt is oblivious and just managed to set up the accounts online.

When I told my aunt about my situation, she immediately cried out, "You can't stay here! I can't do that!". I never asked to stay at her place, she just assumed that's what I wanted. I told her I was giving up my life to help grandma and that I couldn't live in San Francisco anymore but would have to move in with grandma and grandpa to take care of them. I asked only if she could help with arranging the Trust.

I know now to never rely on anyone.

My other uncle is... unreliable. He is still in care of the house his mother died in, from 2009. He never sold it but kept everything the way it was and nothing has been moved. Getting him involved would be a mistake. No one else seems to understand this. He and my aunt don't speak to each other.

I'm now in charge of where grandma and grandpa have to move to, if we can afford it. I have kept track of the finances and must pay the bills now. I estimate we have barely enough to manage for six months. I don't know anything about loans and I don't want my credit to suffer but I have no choice. Oddly enough, the woman at Bank of America, who is taking advantage of my grandma, signed her up for a credit card for $5,000. We had to pay a $50 fee on the card. She claims she doesn't have my Power of Attorney on file at the bank, so I can't remove this credit card that's in my grandma's name.

Everyone has lost the Power of Attorney papers that we gave to them. Even the hospital doesn't have it. I have to update everything on my own.

I'm trying to work with hospice and several different workers, along with a social worker who is too busy to deal with us much. The hospice people tell me, "Your grandma needs 24-hour care, they should just have two people for her rather than 5 different people coming over." I call the 24-hour care people and they send a bunch of women who can't lift grandma because she can't move at all. As a result, her rib is broken by them. We got the x-ray this weekend, a week after it happened. I'm not in charge of staffing these people who often don't show up when they're scheduled. I may have to pay them over-time as they call workers to fill in.

I'm in charge of everything, including the pills. Grandma isn't aware of things much and the care people can't administer the drugs since they're not nurses. Hospice manages the prescriptions. I have to write all the pills down, their dosage and arrange them. I've had to help grandma change her diapers and clean her up since there's only one worker to lift her and some women can't lift her at all. Since grandma's rib got broken, she doesn't trust women to lift her (we think it was one of the women, we don't know who, that had broken her rib). Sometimes she won't allow a man to lift her either. Sometimes she doesn't want to be changed at all. It took over an hour for me and another woman worker to change her in bed. Grandma refused to have a hospital bed. Grandma refused to be changed.

Grandma made me swear not to let this happen to her but it's already happening and there's nothing I can do about it. We think we can have control of our lives, but we are wrong. We are nothing but slaves. Slaves to society and the stupid law that we cannot take our own lives when we are past the point of living. If we lived in Oregon, we could arrange it with doctors that when grandma decides she is too miserable to live, when she doesn't eat anymore (as she had done), that it can be arranged for her to die on a specified time with doctors and witnesses present. It would be easier on the family and not a terrible shock, to have all this arranged beforehand.

But no, we cannot control our own lives. We must suffer until the bitter end.

"I waited too long..." My grandma said to me. "Just like my sister, she waited too long..."

Grandpa doesn't want to live without her. He won't know what to do.

I don't know what to do either. No one prepared me for this. For years grandma told me what to do in case something happens but at that time I thought I could call on family for help. Now I know better. Now I can only rely on myself. Anything I do, any choice I do, could and will be the wrong one. I will be blamed no matter what.

They told me, "You don't have to sacrifice yourself, they have help." They told me, "Your grandma needs more care than we can provide, you have to arrange something." I thought I could take care of her, I said, "I'll move in with her. I'll give up my life to take care of them" and no one said otherwise. "Oh you're a good granddaughter!" they said after that. But when I arrived on Wednesday, I found out I couldn't even lift her or manage everything that I had to do. "Well, you can't do it yourself" they said after they expected me to do everything. Everyone looks to me to solve the problem they don't want to deal with. No one ever thought of me needing help. Whenever I asked for help they quickly left town or made arrangements. "I'm too busy! I won't be here!". They said, "Sorry!". Yeah, sorry. Sorry. Sorry. Sorry. Sorry. Sorry.

What about me? What's going to happen to me? When the money runs out after I paid for grandma and grandpa's care? When I'm left with nothing? What about me? I have no other family except grandma and grandpa. I'm all alone. I don't have a husband or a wife or children to help me. I don't live in an apartment but in a slum-house in the poorest neighborhood of San Francisco. I don't have a car. I only have what grandma and grandpa gave to me. What am I going to do?

I have to make the ultimate sacrifice. Grandma sacrificed plenty for me, but at that time her children were grown, she had a husband and his income to support her. At the time she had her own house with him.

I have nothing.

I'm sacrificing my life for my dying grandparents. No one is helping me.

I'm not sure I'll have a life after this. Right now I'm reading about all the homeless people of San Francisco, "Life on the Streets" by SF Weekly Staff, and how "they got that way". Many had a rough start and had to rely on themselves to survive. I'm not much different from them. I will also be homeless soon.

If I choose to live that way.

If I choose to live at all...