Sometimes I feel like I have failed my kids. Especially the 17 year old. He was 11 when his Dad was diagnosed….middle school. The past 6+ years have been full of cancer, hospice, his sisters teen pregnancy, having a newborn in the house, and his little sister. All of a sudden he is a SENIOR in high school and I feel like I completely failed him. He is so smart and his math skills impress me. Today he mentioned wanting to go to Virginia Tech and that he’d like to do something in the field of software design, computer science or electrical engineering. If Mike was well he’d know how to make that happen.
I’m laying in bed with lots of tears of sadness but also feeling incredibly thankful that I’ve had the chance to spend 20 years with Mike. Through the ups and the downs…I’m thankful.
Having a disabled husband takes a toll on ones emotions. Him being “terminal” BUT outliving expectations – that throws in a unique mixed bag. If I don’t appreciate a moment with him, I feel guilty. If I feel burdened even for a moment, I feel like I WILL feel guilty.
Little things are big things.
We are visiting family and we all sat around and played cards. Except Mike.
Some went out to a restaurant last night…except some of us…Mike couldn’t go and he couldn’t be left alone. I couldn’t help but think of how it SHOULD have gone (in my mind) The teen could have watched the littlest and us adults could have enjoyed an evening out together.
Our families all went to the park yesterday. Half of mine had to stay home. Again, because Mike couldn’t go and couldn’t be left alone. I’m hiding in the bathroom because I couldn’t hold the tears in. I put a smile on my face and have laughter in my heart….but….everything is emotionally hard.
Being around couples and families is hard. Mike and I will never have double date nights again. We won’t have game nights. He can’t have deep conversations. We won’t do fun vacations and getaways.
When he can join us, he won’t be in the pool with the kids, he won’t be throwing a football or running around the playground. He won’t be lifting the kids up to reach the things that can’t reach, and he won’t be there to catch them if they fall. My 9 year old feels the pain of that reality.
Every fun thing I do is missing half of my heart. I can smile and laugh and have fun. But that missing piece because Mike can’t experience it with me always hurts.
You can’t imagine the frustration of wanting to leave the house but not being able to on such a long term basis. This summer I have had more freedom than I have had in a long time. Lately with my oldest and the grand baby not living here I’ve had many opportunities to leave my son in charge at home and leave the house. It’s been amazing, but tomorrow school starts and I won’t have the same freedom and backup like I’ve had over the summer. Over the years I shelved personal hopes and dreams. I had to come to a place where I was completely content having my life revolve around being home and taking care of Mike. As school starts tomorrow I find myself reminding myself that home is where I belong and that I can have complete contentment right here at home. It just takes some rebalancing and centering of my thoughts. I have taken on some work days with a photography company, starting hanging out with new friends, going to church again and have gotten a taste of life outside the house. It’s bitter sweet enjoying the freedom but it being limited.
Its one thing to have kids and find a babysitter, but I find myself with no options for a “sitter” for my husband. (If there was an emergency I have people who will drop everything and be here. I’m talking about just wanting to leave the house) I know there are private companies, nursing homes, adult day cares – but for one reason or another they are not the answer for us. His comfort, our finances, etc.
I need to blog more on the daily life of caregiving. I think people don’t realize the intensity of caring for someone who can’t care for themselves. Mike was up at 3am hungry. He can’t even pour a glass of milk, make toast or a bowl of cereal. So yesterday morning I was up at 3am and took the opportunity to shower him. He can’t shower himself and he often refuses to shower in the moment. He always says “later” but later never easily comes. So I showered him, dressed him and fed him. Then I let him lay back down. I spent some quiet time with God thanking him for the blessings in my life (because there ARE so many blessings.) I prayed for peace over the house and an ease to take everyone out to church. I loaded up the wheelchair and we went to church. While we were out I decided to push our luck and try a fun outing. Mike started to complain of feeling weird, overwhelmed, exhausted, and head hurting but we went for it anyways. We ended up having a beautiful day out of the house.
There are so many dynamics to being a caregiver to someone who has brain issues. There is awkwardness when a waitress asks a question and he doesn’t understand. I have to keep in mind that he gets confused with utensils easily so I either have to cut up his food or order him something that won’t confuse him. There’s the blindside and the fact that there is a likely chance he will swipe anything off the table that is to his right. The fact that many places do not have family restrooms and he isn’t stable to walk well on his own often. The physical toll of lifting him when he can’t stand. The physical toll of lugging around a wheelchair and getting him in and out of the van and in and out of the wheelchair. The fact that he can’t be left alone ever…at home or in public. If I were to take him somewhere alone I can’t leave him at a table or in a church service to go to the bathroom. That many times places just aren’t really handicap accessible. Don’t take this as complaining; it’s just awareness. There are family members out there of caregivers that have no idea what they really go through and I barely scratched the surface. Many are completely bedbound. As hard as life is with Mike, I am passionately thankful for th me aspects of our life that are blessings.
I will continue to be so thankful for his life. Many others like John McCain don’t have the chance to live 6 years after diagnosis like Mike.
As I was scrolling through photos. This one came up. This was a day I was able to leave the house and was really excited to come home and tel Mike about my day. He wasn’t mentally there for conversation that day and slept the entire day. This is the norm. He spends most of his time in bed. I try to stay lighthearted about it so I laughed about him rolling over and going to sleep when I tried to talk to him. I might get mad at our situation but I never get mad at him or take it out on him. This isn’t the life he would choose either. I hope something in this blog touches you in some way. I hope it brings awareness or comfort depending on your situation.
I try not to post about the kids too much because I feel like their story is theirs to tell. As a mom it’s so hard realizing that they are suffering because of their Dads diagnosis. As a mom I feel like I should always be able to deflect bad from harming them, compensate for situations that are less than ideal, basically just make everything ok. It’s a hard realization that this isn’t true. I can’t make this situation not affect them. Most of their lives have been formed around his sickness. Sacrifices have been made. There is plenty of good that they have learned through this, but at what cost?
My mama heart hurts for them.
Sometimes all of the energy we have is put into the very next task at hand. Sometimes we don’t even know how we are going to get through the day, let alone face this giant we are facing.
Live your best DAY possible.
Because some days “life” is overwhelming. Some days “today” is overwhelming. Many “moments” as a caregiver are overwhelming.
Get through the moment.
That’s how you get through the day. That’s how I got through the last 6 years being a caregiver to my husband. He was diagnosed with Glioblastoma in 2012. In 2015 he went on hospice and while he was on hospice our 15 year old daughter became pregnant. Talk about facing giants!! He is still here and our grand baby is a toddler full of joy.
Life is hard, but it is so worth living.
This is not only for those who are caregivers to others. This page is also a place to encourage you to be YOUR caregiver, regardless of your circumstances. You can be someone who is ill and HAS a caregiver. You can be a caregiver to a spouse, parents, child, husband, wife. You can be someone who simply realizes you need to be your own caregiver. You need to love yourself enough to take care of yourself.
Surviving is one thing, but THRIVING and SURVIVING WELL is my goal for Mike. It’s my goal for me and my kids as well. We faced hospice. I planned his funeral. I picked out a cemetery, funeral home, casket. I organized photos for a celebration of life slideshow to play at his funeral. I came to terms with the terminal diagnosis.
I choose joy. I choose to be grateful. I choose to focus on good and happy things. I focus on the blessings.
Grief. That’s one thing I didn’t allow myself to admit daily. The first days of school when Mike was home in bed…I focused on being thankful he was alive. The 4th of July celebrations I haven’t taken my kids to. Our 9 year old has never seen a fireworks show. She had just turned 3 when he was diagnosed. She doesn’t remember the 4th of July when she was one and two. The fact that he still doesn’t realize that our 2.5 year old grandbaby is our grandbaby. The fact that he doesn’t remember our daughters wedding last month. He doesn’t remember that she moved out to her first apartment. He asks if we own our house. If he has a wallet. If he can call his Dad (who passed away over a year ago) I grieve the baseball he can’t play. The movies he can’t watch. (because they lead to anxiety and fear because he can’t separate a tv show from his reality) The restaurants we don’t go to because of the noise level or his difficulty walking. I grieve the enjoyment he should be able to have. The vacation we just took but didn’t enjoy at all. The runs he used to love. The financial wisdom he had. The concerts we don’t go to. The advice I know he’d be giving his kids if his brain was still the same. The conversations we should be having. The experiences we should be enjoying. The married couples we should be bonding with together.
WHOA. That is NOT where I meant for this blog to lead…but I just started to type and this is where it ended up.
I guess someone needed to read this. I’m just going to stop there because I went down a rabbit hole that I didn’t intend on going down.
I will pick up on surviving and thriving in another post. 🙂 Facing grief is an important step in forward momentum.