The caregiver life, hopes and dreams

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.

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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.

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Mama heart

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.

 

 


Caregiver Strong

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 WELL

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.


A caregivers poem

We promise to stay by your side, to be your guide.

….Even in the moments it feels as if the entire universe and our plans collide.

A compass in the wilderness.

Even when the task is vigorous.

We have a bond that only we could ever share.

We will do our best to ease your mind and show we care.

We won’t ask you to remember, or ask you to understand.

We will simply be here to hold your hand.

In the morning, joy will come… even though the night is proving to be unbearably long.

We will rise and stand strong.

When life is crashing like a turbulent wave.

When we feel like we’ve spent all of our energy on day to day tasks, we dig deep to that reserve of energy we knew we had to save.

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#CaregiverStrong

Being a caregiver to your spouse is a unique position to be in. Often it means you give up the hopes and dreams you had together. In my case, it also meant I stopped dreaming about my own goals and dreams. My entire focus has become Mike’s health and well being. I noticed this happen little by little…

“I will sleep in the hospital because he is too confused to be alone.”

“I will take a break from working.”

“I will cut up his food because he can’t figure out utensils.”

“I will shower him because he’s uncomfortable letting anyone else do it.”

“He has a hard time separating reality and television, so I will keep the tv off.”

“He needs to sleep, so I will keep it quiet.”

“He is in the bedroom resting, so I will just pull some clothes out of the clean laundry.”

“Loud noises are hard, so we won’t go to restaurants or crowded areas.”

Ultimately it turns into “No one can ease his anxiety or care for him as well as I can, so I will stay home.”

…Am I right? This is a common theme among caregivers.

Caregiver pamphlets always have elderly people on them. Has anyone else noticed that? There is a whole community of us that are younger and are facing struggles that no one can imagine.

There is so much life to be lived. You can still live fully alive, even while devoting your life to someone else.

Don’t. Give. Up.

More to come on this subject.

Just know you aren’t alone. #caregiverstrong

 

 

 

 

 


Worth it

I’ve been grieving for over 6 years, only my grief is very different than anyone else’s that I know. I have too many widow friends to count. When their heart breaks, mine aches and chips away with each one. Because I continue to support patients and spouses in the brain cancer community, I continue to love and lose.

The grief I’m talking about though is for my life. I know I have a lot to be thankful for. I know I’m blessed. But I lost my husband and marriage in many ways.  The kids lost their Dad in many ways. It’s  heart wrenching to see Kenzie wish her Dad could do the things that other Dads do.

Our marriage has evolved into something very different. Being totally transparent, Mike and I were already in marriage counseling when he was diagnosed. We had good times and bad times, but everyone who knew us knows we had a turbulent marriage. But even so, our marriage was our normal. It was our choice. We made a conscious decision every day to choose each other. Even though we struggled, we had hope for our future. We had plans for our future. We had things we could work on, things we could improve. And we were excited at the possibilities!  There was an excitement for the future! We started traveling. We took a beach weekend getaway, a random weekend in San Francisco, I went with him to Hawaii on a business trip for a week. We had just started deeply focusing on us and taking the extra time and effort to invest in our marriage.

And then one day, everything changed. We went into survival mode. We had to walk each day out not knowing how to even plan for the next.

I lost my husband in many ways very quickly after diagnosis in June 2012. His loved ones lost many pieces of him as the brain tumor and treatment slowly took away his ability to run, play, reason and think in many ways. He didn’t have much common sense, but he was SO smart. 😉 I miss having conversations that he could follow. I miss connecting. I miss him being the head of the household. I miss bouncing ideas off of him. I miss him doing the homeowner repairs, yard work, taking the trash out. I miss him working and stopping by the store on his way home. I miss him coaching our childrens soccer team. I miss his crazy entrepreneur ideas like buying land and canoes and running a business in the mountains and front porch rocking. I miss family vacations. I could go on and on.

We gained a lot too. He still is witty and has his sense of humor. He appreciates and loves deeper than ever. He has a level of compassion deeper than before. (He was compassionate before too.)  He is so kind. He is gentle. (Except when his anxiety and confusion is out of control)

So touching on grief, I’ve been working hard on healthy healing. I want to fuel my body with healthy foods that will nourish my body. I am working on exercise. It’s been quite an experience realizing my strengths, weaknesses and habits. It’s hard to make time to take care of myself. I make sure everyone else is taken care of: but taking care of myself has proven to be a huge challenge. Challenge accepted.

I even started an accountability and support group on Facebook for friends who also want to work on their health.   I did this to hold myself accountable and to help others achieve their goals through accountability and support. I thrive off of the thought of inspiring and motivating others. I might not care about myself enough to exercise, but if my exercise will get someone else motivated to get out and move, I’m more likely to get it done.

I’m not even sure if I stayed on track with this blog post, but I’m posting it anyways.

Thank you for being there and for the prayers, love and support.

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