"I want my shoes... and the things that go in the thing... to go"
Mom - sitting in front of the fireplace after breaking down in tears that she couldn't find her car keys to go back home to Illinois.
FOR THE PARENTS | Our Reality
- The reason we encouraged the boys to take on this cause is that it’s something meaningful and tangible for kids who have lived or are living through Alzheimer’s caregiving. When you are living through caregiving as a parent, of course you are concerned about how the situation might impact your children, but you don’t have time to do the research. Even if you did find a few articles about things you could do to ease the situation for them, your brain just isn’t in a place to retain much and the resources are not easily available... ( unless you live near Connie Siskowski - The Director of The American Association of Caregiving Youth in Boca Raton, FL. ) You are surviving day by day. When it’s over, most people just want to forget about it and move on. We feel like the boys gave up a normal childhood to help serve their grandmother during her last years. This experience changed them. The result is that they turned out a bit more empathetic and mature than most kids their age. They have a passion for helping others who are or were in the same situation.
- Our school administration and teaching staff did not identify caregiving in the home as an individual special circumstance and our schools had no guidance or programs to help support the boys. We could have used the benefit of the doubt for maybe a late homework assignment, or a tardy if we had an involved mom caregiving night. Caregiving issues are a thing to take seriously. There is a need for better staff education on this matter, and awareness programs need to be in place. We attended both a Catholic school and a public school during this time.
- When service hour time came around, and I read the requirements, it was evident to me that children caretakers far exceed what the standard requirements are for Service Learning. Kids living in a home with an Alzheimer’s patient spend an average of 2.5 hours per weekday and an average of 8 hours per weekend.The total is easily over 1000 hours per year. Caregiving for a family member in the home is a community service. With the increasing numbers of caregiving kids and the increasing age of baby boomers, the sandwich generation is one of the most important segments of a community that need support. You can gather a group of 20 5th graders and go down to a nursing home to sing songs for community service hour credit - or you can stay up with your mom trying to calm down your grandmother’s night terrors between 2 am and 4 am. Which senior is better served?
- We live in Northern Virginia. When you read articles about support groups and everything - I was shocked at how inaccessible they were to us. There are no programs for children that I found anywhere. There wasn’t one national Alzheimer’s Support organization that did one thing to benefit us throughout our whole ordeal. Nothing.
- Alzheimer’s caregiving is very hard and very personal.
- Most articles written on the subject of living with an Alzheimer's patient understate the difficulty. (I think it's kind of like having a baby - nobody can really describe what it is like to give birth. You don't know until you physically go through it. Alzheimer's caregiving in your home is pretty much the same thing.)
- People sugarcoat caregiving a lot. If that was their experience - good for them. I have no sugar to put on it. I loved my mom. The last years of Alzheimer's were unspeakably hard.
- I have a hard time relating to people who give advice or write about the subject who haven't been through it themselves.
- Finding help is way harder than I thought it would be. You can't just expect to call ALL the hundreds of marketing driven organizations for senior care listings, home help, etc. and hope that the perfect caregiving fairy will show up. It's just not like that. You can get lucky though - but it is not the norm.
- Predators target seniors. From the home healthcare workers to some crappy doctors, there was a barrage of people who wanted to take advantage of our situation. It changed my view on the world. My mom's dentist got over $25K out of her in unnecessary dental work and had scheduled an additional $20K worth of work on her mouth before I figured it out and stopped the process. Then I got barraged with calls from the office staff about her missing appointments, and she had signed the agreement to do the work, etc. These people, who she had been going to for ten years, wanted to give her surgical cosmetic tooth replacements. Like a smile makeover. It happened. It was crazy. They were stealing from her.
- Going to the hospital with a ranting, angry, smelly parent who is pissed off that they have to go in an ambulance and are as scared as you are is not a typical hospital experience. The many times I was in emergency room with my mom, the treatment was less respectful and less prioritized than if I had gone in with one of my kids or to take care of myself. In the end, my mom was impossible to control in a hospital bed. She was screaming and angry. She bit people. She bit me. It was hard.
- I get a little jealous of people my age who still have their parents participating fully in their children's lives. When we were caregiving for my mom, I sometimes felt that pang of “what if” things were normal. She would be here cheering on the boys or home making dinner for us. Life would be so different if she didn’t have Alzheimer’s. I missed her and my dad.
- Having a parent with Alzheimer's in a facility is entirely different from living with them in your home.
- I was terrified and sad for four years. I mean every day. I had to work. I had to take care of my family. I called my mom every night on the phone for two years before she moved in with us. The situation was consuming and upsetting. I found ways to cope with the personal anxiety. I formed a lot of unhealthy habits to cope.
- I found a good therapist that I could talk to about everything. If you are the primary caretaker - you are alone, admit it. When dealing with your parent, they can say certain things that are so poignant and sad it breaks your heart forever. Many times things happen that make no sense, messes made that are impossible to imagine. There are so many terrible or touching moments that I couldn't share with anyone, not even my husband. There were many times when I had interactions with my mom that were so hard I had to go outside and puke and cry or take a walk alone because it was just so bad.
- Many write about the sweet moments with their loved one. I think more about the night terrors, the fear of walking through her door if we hadn’t checked on her in a while, the hesitation and dread of bringing her coffee every morning - you just didn’t know what you would find.
- Everyone’s experience is unique. Things that are true for others will not necessarily be accurate for your situation.
- I was an only child, so everything fell directly on me. The upside is that I could make all the decisions without arguing with siblings. The bad side is that I was all alone.
- You give up a lot when you are caregiving. Especially with elementary school kids, especially when you work. There’s just not enough time in the day to keep up with it all. Time formerly spent connecting your children or yourself with playdates or girls nights out are just dropped off the priority list. Some friends will never give up on you. Some friends will never forgive you. Memories and friendships solidify with or without you. Whether you are a caregiving kid, or an adult, these connections will be harder to come by for you.
- The end is never what you expect. It will be different and unique to you and your parent. It is a mix of relief and grief. It is scary. The scenes might stay with you for a lifetime. I do believe in caregiving PTSD, and I do consider our family Caregiving veterans - in the sense that we have deep experience in this particular field of caregiving.