Losses and Gains.........

Before becoming my grandchild's caregiver, I was the primary caregiver of both my parents, and a grandmother, in their last years. It would have been easier, had they lived in the same homes, but with the help of my daughter, we managed. Still, there were challenges, and that is putting it mildly. There were many things I lost along the way. But there were many things I gained as well. Here are some of the losses and gains that can come with enabling a loved one to remain in home and out of a hospital.

LOSSES:
 
My Job (and my rest):
Unfortunately in our society, like many families, our family fell through the cracks of in-home care eligibility. Senior citizens are often ineligible for full Medicaid coverage due to age and income. A social worker told me that this is because they have other options, namely Medicare. The only problem with this is that our local In-Home Health Services is a Medicaid based only service. For my mother, who suffered from the progressively debilitating disease, Huntington's Disease, the only options available to her were a state-run nursing home, or for me to quit my job and take care of her myself. In 2012, we had to make that choice and I chose to take care of my mother myself, which meant me losing my job. I had 18 months with Mom before she passed away. During this time, my grandchild moved in with us because of bullying and (unknown to us at the time) developing emotional and mental issues. Shortly before Mom passed away in March of 2014 I realized that I needed to ensure that I could support my grandchild, which would have been impossible on the limited income we would have after Mom's death, so I returned to work. By this time, I had the help of Hospice and family members, so that I could work. It meant me working the overnight shift at my outside job and then caring for Mom after work. I lost sleep, and lots of it. But I managed to learn to nap whenever I could and to sleep whenever Mom slept. Hospice also provided one week per month of respite care, which I utilized to get caught up on rest.

My Sanity:
While I was caring for my mother, my daughter was residing with and caring for my grandmother and my father. In Aug. of 2013, my grandmother had an UTI turn sepsis and passed away within a week's time afterwards. My mother followed seven months later. I struggled for over a month to maintain one home and supplement the income of the other home after both losses. This became impossible so we all ended up residing in my father's home. Three adults and two children in a three bedroom home, with an accumulation of four households of stuff. I loss my privacy. My daughter and I hit a rough patch and she ended up moving out. My oldest grandchild remained living with me and my ailing father. My grandchild's mental issues started really manifesting after the death of my mother. From Jan. 2015 to Jan 2016 she would end up requiring a total of five hospitalizations for her own protection. I didn't see this because I was also not realizing my own fragile mental and emotional stability. In the beginning of June 2015, I ended up switching jobs, which now required a commute of over an hour each way. By this time, we also had Hospice care for my father and he was able to take care of his own basic needs as well. However, in the middle of June, Dad's health took a turn for the worse and he ended up passing away on June 18 2015. My daughter put aside any differences she had with her mom and rushed back home to help. I managed to make it until Sept before I had my breakdown. I ended up staying in a psychiatric hospital for over a week. A struggle with a bad psychiatric reaction to medications prolonged my recovery, but I eventually started to heal. Which was a good thing because by this time we had to make the choice between 24hr home supervision or long-term residential hospitalization. So, even though I had quit my job during my breakdown and was still making my own recovery, I made the choice to take care of my grandchild.

My Car and Eventually My Home:
Here's the thing about buying a car on payments - you can get a great car when you can afford it. But if you lose your job, you lose your car. My car is currently sitting in the driveway, expired registration and canceled insurance, waiting repossession for nonpayment. My income is now $670/mo and my rent is $600/mo. Rent is paid up until June and I am uncertain what the future holds there. Because as of today, I am again a single "parent", raising two grandchildren with emotional needs. But one thing that I am certain of is that we will somehow make it. Which leads me to the gains. If you are still with me then read on, I promise it gets better.

GAINS:

The Gift of Time With Loved Ones:
I think that the biggest gift that I gained during the last 2 1/2 yrs is the time I had with my parents and grandmother. That is time that can not be replaced with any job, income, car, home, or any other "thing". And as difficult as they often were, they were good years. During the 18 months caring for Mom, I learned to smile and laugh during the hard times. She taught me all about "Sunshine and Light". Dad was a grump right up to the end. But I was always a "Daddy's Girl" and I wouldn't give up one moment of the time I had with him, grumpy or not. My grandmother was the same way, grumpy and just tired. I got to see both her and my father pass away with the peacefulness that they could not obtain in life.

Watching My Grandchild Heal at Home:
In January of this year, we were heartbroken to be told that my grandchild required long-term residential hospitalization. However, we were willing to do whatever it took to ensure this child's safety. We met with roadblock after roadblock on obtaining this care and I eventually wrote that letter to the White House, in frustration and desperation. But while multiple agencies were getting involved, as a result of that letter, I discovered that I could take care of her at home. That this could be done with professional support. I knew that it wouldn't be easy and would require a commitment from me more than even caring for my parents did. It was not a decision that I made lightly, but after watching her crisis team in action one day, I realized that it was the right decision for all of us. Since that time I have watched this child's progress with pride and hope that I didn't think would be possible just a mere 3-4 months ago. We did have one setback last week, involving minor self-harm (surface scratch type cutting) and falling behind on the home-based schooling, but we are back on track and feeling positive. Today, my grandchild and I handled a total of six buses just to get to and from a doctor's appointment. And we did okay. We know that we got this, even without a car, we can manage what needs to be done. We are starting to see signs of starting this struggle with the younger grandchild, but this time we are going into it with the lessons we have learned this past year. Hopefully, we will be able to prevent things from getting as bad this time around. Time will tell.

Insight:
This journey, especially that of being my grandchild's caregiver, has been one of constant insight and learning. I have learned that this isn't about politics, insurances, professional abilities. It is about us, here at home. It is about not relying on all those other factors to take care of this child, but relying on them to support our roles as caregiver. I have learned that we all have roles in life that some are better at than others and that an effective team works best by each of us taking the role we are best suited for. Apparently my best role is as primary caregiver. I consider myself the luckiest of all our team because while this role might be the most challenging, it is also the most rewarding. I have learned that we must be proactive in the making sure that our loved ones, especially our children, are receiving the care that they need. Waiting for help to come to you can cause even more harm. The help is there, but we must seek it. We must demand it, if need be. Regardless of the role we take on, we must be willing to make a commitment to ensure the safety and well being of those depending on us. 

BOTTOM LINE:

I have lost "things", and still might lose more things. But I have gained so much more that are irreplaceable. Caregiving, whether for an elderly and dying parent, to a mentally ill grandchild, is more than just challenging. At times it is hell. But at the end of each day, to be able to go to bed knowing that your loved one has made it safely through another day, is a gift that is priceless beyond belief. I do not equate losses with sacrifices. I have sacrificed nothing that I cannot someday replace. I have gained everything that I could never reacquire.

So, if you ever ask me if it was worth it, please don't get offended if I laugh at how silly I find such a question. Worth it? All that and then some. And I wouldn't have it any other way.