It's a dance, really. We circle around together but not quite together.
I am hypervigilent, but trying not to hover.
He sits at the computer, printing out and organizing stuff for the tax man. He is on top of all the business stuff, just as he always has been. He drives short distances. He shops. He does his little projects around the house.
It all feels so normal and I sometimes find myself feeling as if we dodged a bullet, as if we're good, it's all going to be okay.
But then, randomly, there are those moments that knock me sideways. The frustration because he can't find the 'L' key on the computer. Or he's forgotten how to spell his son's name. Or he can't remember which two pills he takes in the morning and which two pills that he takes at night. He's forgotten how to use his cell phone. Maybe, suddenly, he's stuttering and he looks as surprised to hear himself as I am. His hand starts tapping against something. "It sounds like a woodpecker," he says, trying to make a joke of it.
I know for a fact that a million other people would give anything to be in my shoes as they struggle to care for someone who's suffered a major stroke with both debilitating mental and physical changes.
Tonight, he scared me. Just a little thing, but right away, I begin talking. I want him to talk back. Is his speech slurred? I study his hands, his feet, his face, and I try not to betray any sign that I'm assessing him as I assess him.
He's a quiet man. He's always been a quiet man. He looks at me as I talk. If he answers, it's just a word or two, but that's how he has always been.
Finally I burst into tears. Sorrow? Frustration? Just pent up fear? I don't even know but once I started I couldn't stop.
He didn't know what to do, so he's gone on to bed. He was tired. Probably the best thing for him. I imagine this is a scary time for him too.
I sit here in the dark in front of a lit screen and I feel ashamed at my own weakness, but I wonder if he will ever tell me that he loves me again.
Oh Deb…. Hang in there… and…. I betcha he could tell you that if you told him you need to hear it…. Maybe it’s not a bad thing for him to know how worried you are??? So many hugs…. Take care… Another Deb
ReplyDeleteFear, sorrow and tears are very normal but that doesn't make any of it easier. Health issues are a day-to-day struggle with many moments of joy and success (normality) and other ones of despair and worry. I don't think you have anything to be ashamed of but they're your feelings and you have the right to them.
ReplyDelete(((((Debby)))))
ReplyDeleteThose tears can be cathodic. They can relieve pent-up tension and clear your head. Perhaps it will soon be time to share your feelings with him, so you will be aware of his feelings and he, yours. You must feel so alone now but there are a lot of us out here in the ether-world who are supporting you.
ReplyDeletecarthartic
Deletei have been through a similar thing and tried to always be the strong one .but i think its good to show your feelings sometimes.
ReplyDeleteThere's nothing wrong with shedding a few tears when you need to.
ReplyDeleteOk; hugz being sent. Please consider a monthly medication box and prepare it for him. You may need to sit out each separate dose of his meds into a little jello cup for him to take. His making an error from playing with pill bottles, or thinking he still hasn't taken his pills, but already did, because he doesn't know the date at that moment, will cause some quick changes. You are unfortunately on a roller coaster of events with his type of TIAs. It most likely will not be a straight, solid line of recovery. Hopefully the holter monitor is in place, as that, and the accompanying diary of your observations will help the docs figure out these events.
ReplyDeletePlease consider limiting your medical reading to articles from www.medscape.com They are much more accurate than mainstream media.
Would he be willing to tell or read you a story when you wonder if he's stuttering? Just a thought. Linda in Kansas
I understand exactly what you are going through Deb. You want to wave a magic wand and have the husband you know and love restored to you exactly as he was before the TIA's. It's been the same for Keith, especially as two things seem to have been going on in tandem and for longer than we knew.
ReplyDeleteI recognize only too well the feeling overwhelmed, the joy when things seem to be going better and the fear when it is obvious that all is not well. The choked-back tears, the frustration, the worry, the needing to step back from it to some sort of normality which of course is no longer possible.
Gabby bought Keith a pill dispenser which I can put his meds in - except he has upstairs ones for bedtime too, so those don't get put out until we go up to bed.
I hope you can get some me-time for yourself, so you can go out and be distracted for a while. Jennie xx
🫂 xx
ReplyDeleteIn UK we have "dosette boxes" and I looked them up for USA and I think they are referred to as " Pill Boxes" over there! My mum had all her meds in them....and it stops any confusion as to if they have been taken or not.
ReplyDeleteOh gosh, Debby... I am so very sorry for all you are going through. I'm going through a scary time with my mom right now. It's different when it's your spouse though. I'm hoping everything will improve more quickly. You know he loves you. You just have to remember that.
ReplyDeleteYou have your blogmates to listen to you. Nothing wrong with tears. You've had a rough time and still are. You don't have to be strong. You can just be yourself, full of fear for the future and emotional. In spite of Tim's problems, does he feel happy in himself?
ReplyDeleteSending love, hugs and prayers.❤️❤️
ReplyDeleteWhen the catheter saga was at an end, I came into the room and raised my arms victoriously. It was then that Sue broke down into a uncontrollable cry. It’s not weakness, but a reaction to stress or helplessness or whatever the case may be. Hang in there.
ReplyDeleteTears are our human right. Sometimes our hearts are just too full to hold it all and our eyes let go of the overflow.
ReplyDeleteIt is stressful and scary for both of you. Talking about your feelings and having a good cry is helpful. Hope he continues to get stronger each day.
ReplyDeleteGiven the last few weeks, it is almost impossible for you to not to be hyper vigilant. Your writing clearly indicates you are a nurturer by nature. And, of course, you feel the need to cry, and at times I'm sure, feel very alone. Please don't be hard on yourself. That others may have more difficult journeys doesn't mitigate the pain and fear of what you and Tim are experiencing. Know that many folks care for you both--near and far. Mary
ReplyDeleteGive him more time and hope they keep improving. think of the leaps forward he has made from day one. Be thankful you still have him sitting on the couch. maybe not back to himself yet but you can still talk to him, hug him and just know that most days are a little better.
ReplyDeleteSuch a scary time for both of you. Frustration and tears both seem perfectly normal reactions -- not that that makes them any easier to deal with. I'm sorry you're both going through this. :(
ReplyDeleteI am so sorry this has happened. His recovery is going to take time, he has made progress, celebrate that and continue to support him. You are NOT weak, what you are feeling is normal, seeing changes like this in a loved one is hard to bear. Hang in there.
ReplyDeleteLet out the tears...he needs to know even if it takes a while to sink in
ReplyDeleteI think your feelings are all normal and you should cry whenever you feel the need. Don't hold them in, it isn't good for you. Remember you have friends here who care. xx
ReplyDeleteIt's always so scary when you don't know exactly why something happened. We like to know the why because then we can fix it or avoid it in the future. Sometimes there are no answers, or no good answers, which is the scariest.
ReplyDeleteWhen Katie was just over a year old I asked the doctor if Katie was disabled and she said yes but she sounded surprised that I had even asked the question. I needed an answer. Then I spent the next four or five years try to figure out the why. We still have no why and because of that, in the back of my mind, there is a belief that hangs out there that goes like this. "Because the doctors have never been able to tell me why Katie is disabled, or why it happened, I am terrified she will die without warning." When she gets sick, which isn't often, thankfully, I am convinced she will die.
I don't know if this is how you feel but I do know that it's quite a common feeling amongst the family members of my patients. That fear sits there, they carry it around with them, sometimes unawares. It's grief, it's fear, it's anger, it's all of it.
I'm so sorry you feel ashamed of your tears sweetie. I'm a weeper, always. It's okay to cry. There's a saying I like, "The cure for anything is salt water: tears, sweat and the sea." Tears help, or at least they help me.
Sending hugs and love.
This is hard. I understand well the hyper-vigilance - been there. Maybe some people (like Michael J Fox) are able to not worry about things until the worst case scenario is proven right - but... most of us can't if it is about someone you love (maybe it is easier to decide not to worry if it is about yourself). Crying seems a sensible reaction to the stress and worry about the situation. I hope you get a chance to have some kind of break. I used to make (a small amount of) fudge - something about the concentration required plus the sugar afterwards - to temporarily break the worry cycle. And don't lose hope - the brain can be amazing at re-wiring itself... Cat.
ReplyDeleteGrant yourself grace. As others have said, crying/tears are a normal reaction to stress and worries. Tim has come so far, and he has far to go on the road to recovery. And YOU have been there every step of the way, along with a good medical team. Never feel ashamed of your tears or what you perceive as your own weakness. You're human, and a danged fine, loving, caring kind human! The human brain is amazing, and its plasticity will astound you as Tim's brain rewires itself. It will take time and patience, on your part and Tim's. Be kind to yourself. Do not be too proud to accept help from others. Tim, William, Houdini, and your loved ones need you.
ReplyDelete