Caring for an aging and ailing family member is immensely hard. It consumes so much energy, attention, and yes, money as well.
Caring for a child with special needs can and often is just as immensely hard, and is often a much longer journey. While I primarily focus on caring for an aging parent in this post, almost all of the points apply to caring for a child with special needs as well, and the accompanying printable list is just as useful for these parents as well.
Support can be a difficult resource to find at times, and respite even more elusive.
It has been a year now since our role as full-time caregivers to an elderly parent ended. We have still not fully recovered. We are still floating in bits and pieces in the aftermath of a storm that pulled our family in so many directions at once we felt parts tearing and then smashing into each other again.
For a family who has some time to prepare for a loved one's illness, it can be incredibly hard to care for that one full time. When you are thrown full force into it without any time to prepare, however, it is beyond overwhelming.
For someone on the outside looking in, things could seem very strait forward and black and white. But I promise, it gets very muddled down in the trenches.
Many times during the period we were caring for Grandpa friends and family made offers of assistance. "If there's anything you need." "Don't hesitate to call if you need something." I appreciated the sentiment of these statements. I knew they were genuine words from people who cared about our family.
I could not ask for what I didn't even know I needed though. At the time, I was drowning in responsibilities, hardly any that I could just hand over to someone else to manage for me. Grandpa arrived at the zenith of difficulties with Kit and Zak and learning that Autism and SPD were behind the nonstop issues that had dominated the previous year and a half. And things got worse before they got better, at least where Kit and Grandpa were concerned.
Now looking back, it's easier to see what, where, and when I needed certain things that would have or did give a measure of relief. It's also clearer what proved completely unhelpful.
Here is a list of Needs and Not Needs that hopefully might make another family's life as caregivers a little easier.
I Needed...help with the house work. So many days I felt like I was busy all day but the house looked worse than when I started. Being home all day and homeschooling may lead one to think that I should have had plenty of time and hands to keep up with the house, but the exact opposite seems to be true. My homeschooled kids are very messy by nature and very prone to forgetfulness. Add other challenges inherent to Autism and Sensory issues, it's a recipe for household disaster. I never could get more than just cursory cleaning done. By the time I finished one surface job, three more disasters had occurred.
Three times I hired someone to come in and do the deeper cleaning for me, but only once one actually showed up and did any cleaning. She did a fantastic job, and then her life promptly got complicated so that she could no longer come to clean. After that I hired a teenager to entertain the kids for a few hours one afternoon a week so that I could get in some serious cleaning. That worked out great for a good part of the summer, but then she had to resume her own home and school responsibilities as well. I even traded music lessons for cleaning with a friend until her kiddos lost interest in the lessons.
What I really needed was someone or several someones to come on a regular, reliable basis and help me tackle the deeper cleaning chores that would have allowed me to catch up and stay afloat better. I was willing to pay what I could, but what I really needed was someone who would not have taken my embarrassed no for an answer. A few friends and family members did insist and simply rolled up their sleeves and made me let them help, and honestly I needed that. I needed them. I needed to let go of feeling ashamed and embarrassed at needing help and open my heart and arms to accept the gifts of labor and love that others were offering.
I Needed...meals. We became a family of six overnight. The sixth and newest member being a full grown person who ate regular food. It was already a challenge to cook for a family of five, but now we also had Grandpa whose finicky eating habits surpassed all those of any picky eater I had ever met. Many days, Victor and I had to prepare separate meals just for Grandpa. This was exhausting. I wish I had thought to call up those friends who had offered to help and ask them to bring me freezer friendly ready made meals to get the kids and us fed and through those tough days instead of turning to fast food.
I Needed...encouragement. Several good friends and close family members proved true by always having ready shoulders to cry on or an ear when I needed to vent. There were many who genuinely commended Victor and I for caring for Grandpa. All of those words were appreciated. The best and longest lasting encouragement came when friends would write us a card or letter though. It was something we could hang on the fridge and look at when we were hiding ham and chicken in his salad so that he would get some protein for the day since he refused to eat any thing except salad for months. Those cards and letters are visual hugs, and they are so helpful in making a caregiver feel noticed and appreciated.
I Didn't Need...people asking when we were going to move him to a nursing home. This is an intensely private and personal decision. Each family and caregiver have different aspects of life and circumstances to consider. While an outsider may feel they would make a choice easily, one really never knows until one is faced with those kinds of issues, challenges, and decisions. If a caregiver feels comfortable talking about it they will. If they do not, it feels awful to have to awkwardly explain or avoid discussing a topic which may feel intensely private. Trust me, it is a subject that has been investigated by the caregivers and family. We all make choices for many different reasons. Respecting a caregivers choice and privacy regardless of one's own feelings or even experiences can go a long way toward becoming one in whom caregivers confide and really trust.
I Needed...breaks. Yes, our situation was especially unique, in that we were smack in the middle of Autism and SPD and were learning everything as we were going along with it at the same time as we became full-time caregivers for an elderly and mentally ailing Grandpa. Finding a babysitter for Kit was nearly impossible. Finding a babysitter for three kids one with real special needs and a Grandpa with issues, not going to happen. Thankfully, Auntie moved closer to us, and Lela and Nana also lived near enough by that they could periodically come down and hold down the fort for an evening or afternoon and let Victor and I have a date night.
We were and are still so grateful for those who learned signs to be able to talk to and understand Kit when she was non-verbal. The list of people who could step up and steer our ship without us on board was very small. It often took making multiple arrangements with family members and friends to make certain plans happen. Because of the energy and organization involved, we most often simply stayed in rather than go out. We handled everything ourselves instead of delegating more. This was harmful to us as individuals and as a couple. We both hit burnout multiple times in a matter of two years. Our patience worn thin because of life's demands meant that we had little to give to one another. We needed more people who were willing to come spend as much time as necessary letting Kit get used to them, to learn sign language, her routines, and Grandpa's as well so that Victor and I could have had more opportunities to feel relieved of duty and focus on each other for a while.
I Didn't Need...to be reminded of what I fun person I used to be. Our world came crashing in on us in multiple ways the year Grandpa moved in. We were already feeling the changes happening due to Kit getting older and having trouble going places or having people over. Besides the logistics, going out was just simply not something I had the energy for anymore. I wanted naps, quiet space without screaming meltdowns happening in my lap, or to eat something in one sitting. While going out with friends did have an aspect of fun and held the potential to be good for me, I could barely muster the energy to dig through the laundry for a clean bra on most days, much less shower, make up, hair etc.
Gradually the invites slowed in frequency, then stopped all together. I was okay with it, honestly, a little relieved. I didn't have to excuse myself and see the hurt or disappointment in a friend's eyes if there was no invitation to start with. I had some amazing supportive friends through those tough times. I would have loved it even more if more of them had shown up with coffee and muffins and were absolutely okay with ignoring the grossness all around the house and just talked with me, filled me in on the world outside of Autism and Alzheimer's.
I Didn't Need...advice. At the risk of sounding like a know-it-all and like a real jerk, the vast majority of the time we really needed empathy rather than advice. Our situation truly had some unique aspects, and Victor and I were really the experts in managing things. When others (specifically those not closely related or close friends) would start a sentence with 'you should' or 'you need to', it made me want to scream sometimes! I end up looking like a jerk if I try to explain why that suggestion won't work, or I waste valuable energy trying something anyway that I have experienced going sour before.
This does no mean that we did not ask for or seek out guidance and advice, we absolutely did, because we are not know-it-alls and really wanted to do right for Grandpa and our kids, special needs or not. It was when it was unsolicited, an especially from ones not particularly familiar with our situation that it proved a source of frustration rather than helpful.
Full-time care giving for an elderly loved one is definitely one of the hardest things we have ever done. It is impossible for us to separate this form of care giving from that of being full-time parents to kids with special needs. We had both thrust upon us nearly simultaneously. The interesting thing though is that whatever challenge you might be facing related to either one or both, the list applies to your needs. There are gems to be harvested even for parents without extenuating circumstances. Take a good look at your situation and see what areas your needs are not being sufficiently met. The list above may help you to identify problem spots that you need more help shoring up.
In the moment, when someone reassuringly says, "let me know if there is anything you need, anything at all", we often seem to suddenly forget every area that is lying around in need of some TLC. So having a list of things you often struggle with can be a life and energy saver.
Most people who offer really do want to help, but they don't want to breech your privacy and they don't know your areas of greatest need. But if you have a list of specific ways friends and neighbors can help, they will readily take on an assigned task.This is so much easier and less stressful than having to call up someone and feel like you are disrupting their life because you can't handle yours. And you both come away feeling better instead of helpless.
Here is a printable list to help give you ideas of how to allow others the privilege of helping you. I highly recommend you also keep a list on your phone or mobile device and let ones chose a task and set up a day that works for you both. Put this appointment into your calendar!
I wish I had had this while Grandpa was alive and under our care. I think it would have helped a lot. Hopefully it can help other caregivers get what they need!