Another Day in the Life of a Caregiving Spouse

I had a small burger patty and some blueberries with sour cream and a pinch of sweetener for lunch. That’s one of my favorite things 🙂 Plus, the doctor noticed I’d lost some weight. YAY! I decided the 55 lbs I put on since Steve’s stroke, has to go.
His blood work came back excellent. His PSA has stayed the same (prostate is enlarged) b/p and cholesterol are great. Diabetes is still controlled with diet. Steve’s fine except he decided to be a whiner and carry on about hating Rocky Mount again. How can he hate it? He never goes outside. He got all ticky and made me drop him off instead of coming with me on errands. Fine. I took my time.
It’s hard to always do everything alone. I love him but it’s not enough for either of us. I sure wish he’d decide to still LIVE. We are both too young to go on like this. I’m not going to stop doing what I can because he won’t join in. Unless he’s tired and strained, his mind is good. He has what I think of as EPISODES of difficulty now, which is so much better than before. Praise god for that improvement. His taking Prozac has help ME more than I can say. I feel guilty for wanting MORE and I feel like he’s released our relationship except for the part of me that feeds him and cleans up.
99% of the time I manage by putting on my smile and thanking God and putting everything out of my mind. I can ‘busy work’ with the best. Still… sometimes I find myself kinda wishing I didn’t remember how we were. The dogs were all on his bed the other morning and I slid over so he could get in my bed, with me. Out of habit, he raised his arm and I moved against him and we laid like that for a couple of minutes then he rolled over saying his shoulder hurt. I got up and cried.
This message sat for several hours during which time I let myself get angry. He was complaining about our home and where it is, loudly, and I let him have it. I told him how I felt about US and ME and his own body not being enough to inspire him to walk and work on himself. I’m paying a lady to come in tomorrow and clean for me. She will add the shine to things I can’t manage; mostly dusting and floors.
Steve has and could, fold clothes for me and with me – He was getting his own coffee and putting his dishes into the sink and picking up his own trash, and he fed the dogs and washed their bowels. Now nothing. He won’t even put his peanut butter on bread. I feel eating out of the jar is gross. I know he’s weaker – he is back on his cane because he said his ankle was going to snap in two. He won’t take a Tylenol. Now he can’t walk well again. He moves only to the bathroom or between chairs – 8ft. I called BS on his not being able. He doesn’t want to be able. He just wants it to go away and be over. I get that, oh God how I get that. He finished his trivia game online and hung his head for a bit then went off to bed at 5:30. I wish I’d of bit my tongue.
I so seldom get angry. I rarely verbalize it. Today I did and then I felt instantly bad. He didn’t do this on purpose. He didn’t have a stroke because he wanted to. I want to raise my voice to the sky and scream. Why did this happen? We were nice people trying to build our lives and finish raising our kids. We were lovers and friends and confidants – and now WHAT???? I am so tired of being alone. Some days I do it better than others… today wasn’t one of those days.
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Tapped by the “it’s not fair” fairy’s wand – but she missed!

Last December, out of the blue, I got a text from a friend I’ve had since my oldest daughter was 3 months old. It shocked the heck out of me. My best friend in the world said this to me – she loved a man who had multiple strokes and didn’t marry him because he took too much effort. And then she said this to me without any conversation passing between us for 6 months! —————– Maybe it isn’t so bad, but here I am 9 months later and I have nothing to say to her. We loose things and relationships and our partners and then we have to figure out how to rebuild our lives, too. I’m struck by the “it’s not fair” fairy’s wand, way too often. I am not hateful or mean or uncaring. I have a blog. Most days it feels like I’ve lost everyone from my life.

If he’s fully aware of the day and knows the ____ day he should be grateful and shut up. Are you sure he doesn’t have PBA? It’s totally common after strokes….what isn’t common is all this drama! Sorry, I know 3 other people that have had back to back strokes -2 that live alone even and after a year 1 of them is back to work. the other gets disability but is recovering and even volunteers at his kids school, the third is still battling other health issues including a brain tumor. I would get him to the doctor to see if there isn’t some underlying issue and get him on an antidepressant! I personally wouldn’t want to be that miserable and be alive either. Don’t enable him Amber its really NOT better than being dead.

where did this come from? After talking to Kaiha?
I was told it’s not PBA.
it’s grief and depression.

We all made a “pact” not to talk about you. Actually been concerned about you for several months.. look PBA up online (uncontrollable crying laughing) it just seems like there is no desire to be any different.

you’re right – he has no desire to be any different except BETTER. He’s not even close to better and it is awful for him. He didn’t ask for this. I am far from enabling. If he had a place to go back in Atlanta, I’m sure he would go there but he’s stuck. I may put my feelings out too often, but except for a few people online, I feel pretty forgotten on my end. My kids don’t call and maybe it’s the stroke there too, but Steve’s not the monster they act like he is. You realize the hospital records say his temp was 84 degrees when they found him. There was no reason for him to even be alive and yet here he is. I try to tell him to be thankful for his life and people pop up with that opinion that no, this is not better than being dead. How dare you? It is better. He’s healthier now than he’s ever been but he has damage and it’s not the kind that is going to kill him, it just limits him. sometimes he’s clear and present in his mind, and sometimes especially when he’s upset, he’s not right. The mind directs it’s energy to the part that is hurting and it takes away from the other abilities. He also has to use and exercise every part of himself or he has to start over. His stroke was hemorrhagic and is the least common kind. I can’t explain it all, but add the depression which I couldn’t get the drs appt moved up to address – and it’s miserable all around.
We are in a new place, no friends except online, no support except online and I’m sorry you have to see it. But we aren’t going away.

I guess I just hear lots of justifications for inappropriate behaviors don’t want you to go away just want him to move forward so many MORE in worse shape than he is. Your right he IS alive and he shouldn’t be.

That’s me – justifying how people are so I can talk myself into keeping on in relationships that most would cut off.
I do it for everyone who treats me bad or ignores me when I love them. Kaiha’s been no peach this last year. And I’d even let Kayla and Kansas back in to abuse me if they asked. I’ve reached out to my mom and to Steve’s brother – all people who most would turn their back on. But not me… I justify so there is always a door to open. I am not trying to be negative, but it’s pretty lonely on my end except for a blurb or two on FB. I’m sorry to rant. It’s just a time where I’m trying my best to keep my head up and make it through another empty Christmas.

I hear your words they just are just the same ones every year. Your kids treat you bad, close the door! Drop Steve off on the doorstep of the old house and go back home, close the door! Choose life and happiness don’t put that family junk out there. Move forward alone because alone is not bad company! I need to stop for a bit I’m sorry I’m snapping at the girls and it’s not their thing.

it’s fine – enjoy your day.

And amber Christmas is just another day… don’t make it something it isn’t. You know I love you even though it doesn’t sound like it. I’m sorry I want you to feel the love and I’m attacking please forgive me. Sometimes silence from others simply means they have jobs and bigger local family obligations and expectations. Sweetie I think of you several times a day.

I know it is another day. There is no way to be alone and it be ok. You get that right? It’s the anniversary of Steve’s stroke and 7 yrs of unemployment. That didn’t touch you except through me. People are real good at the hit and run advice and then they disappear for months. And yes, you do it too. Things like long term care giving affect the whole circle of life. If people would check in sometimes so there was contact regularly, those of us stuck in situations would be able to shake off the aloneness . I can’t even see to read this right now. I’m crying and can’t read. No, I don’t know I’m thought of several times a day. What I get is that people are uncomfortable because I talk about the daily struggle. I guess you can click unfollow and not see it. I also don’t mean to attack – but man. FB is all I have for support. I fight feeling like I should deactivate it every day because it’s too hard for those looking in.

Start a blog Amber ppl can go read when they are mentally prepared Facebook throws it in our face! I don’t open it everyday to see your struggle sometimes I need the strength to move on!

Do you know how that sounds?


I know you don’t read my stuff – just click the unfollow button.

I won’t be doing that.

then understand I am doing the best I can and you are gonna see my guts spill from time to time. I don’t get to mentally prepare either.

Well that sounds vindictive I’m suffering so somebody else needs to suffer.

really? Go have your Holiday Lisa. I’m not being vindictive because you are uncomfortable. You can choose to see what I say or not see it. How is that vindictive? You can pop in when you feel like it. Unfollowing doesn’t mean we aren’t friends. Do what you are comfortable with. I have to live this daily and FB is where my support is. Why would you even think of taking that from me?

Think about how hateful you are becoming, I wouldn’t take anything from you Amber.

I think you should read today’s exchange Lisa. Surely you don’t mean how this has come across either.

Probably not but I don’t feel like I know who you are anymore, it seems you “like” being a victim I thought you were getting past all that.

this conversation is done. I don’t owe you justification for anything. Just unfollow me. That’s your simple answer.
I won’t love you any less – and I do love you.

Never said you did. I thought it was honesty and concern for you, sorry for upsetting you more.

I have all these words inside about this and mostly I hold them back. You see so little of them because I don’t say them.No one wants to hear them. I just over reacted to love and concern stated in a way that hit my raw nerves.

Sometimes I wonder if anyone ever survived a stroke gracefully? 2 yrs, 3 yrs, 5 yrs, 7, 10….do all friends think we are selfish and dramatic and hateful and vindictive? Is it our plight to suffer in silence so we don’t inflict our lives on others? I guess I was kind of missing having a friend this morning and ran across THIS just as I was almost going to reach out.

And then my neighbor called me. She wanted to check on us. I think it’s important to keep our perspective straight even after being broadsided. Which happens a lot.

Giving, loving, serving, staying thankful and praising our God. Or sending out love to our fellow man if we aren’t Christian in whatever way we do – I really think it’s the only way we will be ok in the end. Plus, if I ever have to deal with the loss of my own mind, I want kindness and joy to be what’s left of me. 

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yesterday’s encouragement for the care giving wife

I decided to take this off of the reply thread I was responding to because it became too long. Before the stroke, we worked, we watched tv, we grocery shopped together – we played trivia, we hung out. I knitted while he watched sports. What did you do that you still do?

I get the nightmare part about this whole thing. From the time I was a kid though, life has been hard. I’ve always had to look for ways to cope.

My gramma used to tell me life is about balance. I clung to that all the years my kids were growing up. 1 was depressed. 2 were ADHD/bipolar, one had anxiety disorder, one has Asperger’s. I have 6 kids… It was my job to hold balance. — and now they are grown.

Kids growing up happens faster than you can believe. It’s the same with every day of our lives, isn’t it? We can’t change what has happened, only how we react to it. I used to tell my kids there may be bad moments, but never bad days. My husband would get so mad at me for being positive. He said he was gonna put “Pollyanna” on my headstone. I used to laugh and say go ahead. I still feel that way. “I am and always will be the optimist – the hoper of far-flung hopes – the dreamer of improbable dreams.”

Find a method to the madness. (It’s why I like Doctor Who so much. He is a hero with a screw driver, two hearts, older than our universe, able to be male or female, a time lord. lol he’s a madman with a box!)

Don’t beat yourself up!!!!!

Start every day saying thank you. Allow yourself permission to say no, to not do a chore, to let some dust settle. Delegate as much as you can. Make eye contact with your husband. Keep a blessing jar. Write down the good stuff. Don’t take phone calls; screen them so you only talk to who you choose. Stop apologizing. There are things we can see one day that we can’t see during another so change your plans when necessary. Pace yourself. Use pie plates to serve dinner in (they hold paper plates, collect crumbs and sit on laps well). Simplify everything. Play music. Collect mantras. Keep index cards with inspiration on them – from songs, to sayings, to scriptures, to recipes, Make notes about things that work. Share ideas. Keep a book in the bathroom. OR tape an inspirational poster to the back of the bathroom door so you can read it when you sit.

Find something for your hands to do when you are sitting. I knit. Tarsha colored and did her school work. Someone else might do a different craft. If you can’t craft, set up a card table with a jigsaw puzzle on it. It will make a difference. Carry a worry stone – whatever it turns into, stress releases through our fingers.

If something seems too hard, break it down into parts and see what you can change.

Always begin when you remember. 

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for worse? Is that where we are? I don’t think so.

I sat today and made myself look at Steve. I’d forgotten he has freckles on his head. We had doctor appointments this morning and she is going to try Steve on Prozac. After we left, I told him I wanted to take him for a $5 Bag lunch at Hardies. I really hi-jacked him. He didn’t say much as today’s been hard on him. His hip has started to hurt. We just sat there and experienced the moment. It’s the first time he’s left the house in a month. I reached my hand across the table and didn’t say a word. He put his hand on top of mine and we sat and looked out the window. A few minutes later, he turned sideways and tried to use his right arm and hand to grasp the cane. He gave it a very concentrated effort, twice. He couldn’t do it. He HAD a grip and could squeeze this time last year and now he can’t. He won’t go to church now and I’m sure he doesn’t pray. He’s angry that he’s not getting better. He started this day stomping and babbling and crying and I just told him he was GOING to the doctor and he was GOING to try an anti-depressant and he might as well not let his mood escalate. He understands me when he looses his words he just has no control while it lasts. It’s like telling a kid to stop only he’s not a kid and he won’t. I know, he argues “can’t”.
I’ve been thinking about the for better, for worse part of our vows lately. I’m not going anywhere. If he chooses to, it’s not going to be because I didn’t uphold my end. It was hard for me to get past the picture of food falling from his mouth and the foot long drool hanging and the snot. and the pee all down the front of the commode soaking into my vinyl flooring. Blah. I’ve put on 50 lbs and my back is getting worse from the sitting all day keeping him company. I have got to use this treadmill. My front teeth have crumbled and broken off – I look like a meth addict. He has a bit of worse to contend with too.
He woke up and asked me if I made fried chicken. I was baking chicken…but I don’t fry it. He misses being able to make decisions. I just do things most of the time. I don’t ask him because he cries and it ends up being “whatever you think” after a 2 hr argument.
Since we sold the house and got the check from it, I’ve put back money for big repairs and have gone about getting the things we’ve needed for the household. Honestly, we needed double the money we got. I got an estimate from people who care about us, and it came to more than we even received. So I have shut out the wants like fixing up the pantry and having someone paint inside and out. Instead, I’ have replaced stuff we lost in the move – a lawn mower, the treadmill, a chainsaw, sheets, blankets – 2 quilts and a comforter per bed… I paid off my love seat and bought both of us refurbished computers. I’ve gotten some clothes and a small set of hot rollers. I got 3$ a panel sheer curtains off of E bay and I got a yarn swift and a grill. Things are still sitting in boxes because HE always put stuff together. I have to do it when the time is perfect. I tithed on that money and I gifted a bit of it and paid some people back who really helped us during all this tribulation. So things are what they are. I’m not so upset about them. We will be more comfortable going forward.
So back to the vows – Is it the worse time? The time I swore to be faithful through? I don’t know. It seems pretty awful sometimes. On the other hand, I still have an amazing list of thank you’s to say each morning. The coffee is good. My knitting sells when I put it out there. I have friends and a paid off house. And my dogs and son make me laugh. I have enough to share and GIVE. So even though we get hung up in the better or worse aspect of things – my vows said exactly “I Amber take you Steve to be my lawful husband, to have and to hold from this day forward, for better, for worse, for richer for poorer, in sickness and in health as long as we both shall live.” Think about what you said too – For me, I realize tonight that there are 6 parts to that promise. I’m sure the vows or promises we made are different yet similar, for each of us. It came to me what a disservice we do both our mates and ourselves when we don’t face each day as a NEW day and let it become the best day it can be – even if it’s awful, there is something to draw from it that God can use to make us better people.
I remember back when I was care giving for Steve’s mom. She had ALS. She and Geoffrey, my son, both got the flu. I’d made a Thanksgiving meal from boxes and frozen items because it was the best I could do. Mom was puking into a trash can and my 7 yr old boy was fighting diarrhea and vomiting and crying. He was on the toilet, holding a bowl to puke in and he lifted his little tear stained face and said Mommy, puking and pooping at the same time is really unfair. All I could do was offer him a cool rag and say “Yeah Geoffie, it really is.”
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It’s a good morning. Steve’s up, we watched recordings of Jeopardy and Hollywood Game Night and he’s having cereal. I’ve got 4 more rows before starting my sock gusset. G’s gonna vacuum. Kitty is doing super – she pounced my foot this morning. Brave girl lol. She also interacted with Rory and Salt and they all did well.

I’ve finished Job again this week. I think the only time I’ve ever considered God’s glory in that much detail was/is when I am totally silent and uninterrupted. The BIGNESS of all of Creation and the manifestation in nature and Spirit – of all that POWER transcends all religion. How can anyone not be lost in the AWE of the ALL? The Universe, the I AM? We exist down here with such pettiness; imagining that right and wrong registers on the same scale. Such vanity.  As Christ died for us, the preordained perfect sacrifice, his words take on even greater meaning “Father forgive them, they know not what they do.” But God knows and (THEY) work the plan designed before the foundations of the world.
What if we all prayed “Thy Kingdom come, Thy will be done on earth, as it is in heaven.” What if we all stopped fighting each other in the name of Left and Right, and Right and Wrong, and Good and Bad? What if we trusted – our Greatest God/Goddess – I AM – Creator/Comforter/Word, the ALL, to get it right? What if our colors and where we are from don’t matter at all? We are planned to be the family (wife, sons/daughters) with the same inheritance TOGETHER. It’s all going to become what it was always meant to be. A way of LOVE.
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omg…now I’m an enabler. I practice being kind and loving and letting my family come to their own decisions in their own time – and now I enable. There is no winning. I am so angry right now I can’t stand it. People take advantage of me knowing I am the support and lover through the darkness in their lives, and right now I want to tell them all to…. and I can’t say it.

Make your own oatmeal. Make your own sandwiches. Get your dog. Get a job. Go to f-ing bed. Get up when it’s daytime. Empty the trash. Wash your own grunge from the toilet. Clean your own side table. Open the door and come out of your room! Don’t tell me I said you could sit there or not come here for another year….don’t tell me I said you can sit in a chair and loose your legs. Stop blaming me and do what you should do. This means husband AND kids.

That handicapped sign is MINE not Steve’s. I push through so much f-ing back pain without a word to anyone. When I go down which I know is coming sooner because of caregiving, what will happen to us all? I could scream and there is no point. My son, my husband, my daughter, other people… what do I have stamped on my forehead? FOOL? NO. I do not. I am kind giving and I love selfish, taking, using people.

It is YOUR place to be responsible for yourself. You know darn well you are using me. Stop it! Just because I love you doesn’t mean you get to sit there and whine how you CAN’T and leave me to clean your mess. I live here too so I clean it up – all of it because I can’t stand it while you grieve your trash.

Enabler… F* that. Wives and mothers and carers are all enablers I guess. Just growl… If I did what I wanted, I’d have a home of my own that no one cried about hating day in and day out. I’d not have anyone here but my dogs. I’d see my grandkids and not have to be bombarded with negative chatter all day. I’d have my table in the dining room and a desk for the computer. I’d have an attic with only christmas ornaments in it. I’d rent a room to someone to help me be able to take care of MY needs. I wouldn’t have to fight someone constantly to get up and walk around.

I’d go walk into the yarn store. I’d take a class. I’d play my guitar. I wouldn’t have a tv on 24/7. I wouldn’t have a tv at all or a cable bill. I would be making payments on a car that I like instead of one easy for someone else to get into. I want to sing with my music and have someone love me enough to come to me for a change. I want to sleep in the dark.

I’ve given my whole life to other people who call me selfish, who close doors in my face and say the meanest things and I give it to GOD because it is my place to LOVE.

Enabler… I feel like Jesus when he threw the money changers tables over… forgive … love… turn the other cheek. When is it my turn to be loved and valued? I am a wife. I am a mother. I am a grandmother. No one gives a hoot but ME. I get to be the poor grandma and I can see from pictures the little things I gather are not needed and too simple. I’m tired of having people blame me for their own sh**.

I go to my pen and to my knees and I will gently put ME away again. I want to sit outside and drum to my God until my hands are numb.

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YEP… this

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