Two weeks post stroke and counting

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Hubby dearest had his two week post hospital release check up. We saw our new family doctor. This is a point of loss for us because I really liked our previous doctor but her practice is not geared to his needs right now. Fortunately, the new guy turned out to be a nice young man, personable, and knowledgeable and he works closely with the neurologist on other issues with other people. We left feeling confident about him.

I knew on a rational level that we were in for a long recovery but emotionally I was not ready for what this new doctor said. One thing that added to my hope was the slight weakness of the left leg and the occasional tremble of the left hand seemed to have pretty much gone away within the first two days home. I was hoping to get a “Yes, your life can go back to normal now”. I did not get it. Instead I got a reality check. The neurological exam showed the weakness on one side is still there. Life is not going to return to normal anytime soon. In three months we go for the update CT and a neurology consult. Then we see the new doctor again one week later. Meantime, we do nothing unless something changes. If something changes we are to come in right away no matter the time of day or the day of the week. Otherwise we carry on as is.

Because of how mild the stroke was we have no instructions for rehab. Basically he is to simply go back to life and ignore the tiny tremor and slight weakness on one side. They will go away or they will not. For the strange fatigue that hits like running into a wall, same thing. Rest when tired. Stop when you don’t feel like working and then work and live when you do. It too might go away in time (but not anytime soon) or it might not. This might be the new normal.

We brought up all the meds and some side effects, and got kind of a shock. Maybe in three months we can talk about changing or lowering meds but most likely not.  All he is allowed to do is change the time of day to a better time. On this new doctor’s advice we ordered our own blood pressure monitor. We got home and filled out forms for all those new meds and filed it with our insurance company and promptly got audited. Their computer noticed something new and now we have to prove this change is real. All the money we spent on drugs must now wait for fourteen extra days for the audit to be processed and then up to ten more working days for the refund. For the first time in years, we have blown through our deductible. And to think I was ready to cancel that supplementary insurance because of the cost of it. Thank goodness I did not!

We are in for a long winter in our little house because we won’t be able to travel south for at least one year. No travel insurance will cover him. Among our recent investments was a desk treadmill combination. In the past, cold weather meant we just didn’t venture out and we got fat and grumpy. That was the main reason we went south, to be healthier. This will simply not do in our new normal. The combination of desk treadmill should mean we can keep up with our walks in winter. Of course another friend told us he purchased a treadmill post heart attack and it is now a very expensive clothes hanger. His good intentions went nowhere. You get used to limitations, he says. Can I live with that? Right now today we are determined we won’t. I alternate between wanting to start blowing some of our savings to purchase everything we need to make the house perfect for winter right now, and trying to remain within a budget just in case we both live another thirty years. There must be a happy medium in there somewhere.

And then there is the fear. Every cough, every yawn, every bout of fatigue and I am watching him. If he naps for too long I go and check he’s still breathing. If he complains of being tired and goes to rest I calculate in my mind how long since the last nap. Is this worse? Is this a change? He grumbled about something ordinary and I found myself wondering, is this a personality change? He got impatient and overreacted to some normal family drama. I worried about what the stress was doing. Could this bit of drama, which forced his systolic blood pressure up 40 points for a few minutes on the damned machine, cause another stroke? Please calm down. Don’t respond. Leave it. I didn’t want to nag him so instead I told the dog to leave it and she looked me all puzzled and hurt. Leave what? I was sleeping. Fortunately dogs are forgiving. A bit of cheese and all was forgotten.

It has affected our children. I got so angry at the grown son involved in the drama for that rise in blood pressure and then I was shocked to discover he has his own anger. Mortality and aging has come up and smacked him in the face from both his father’s near miss with death and his now adult son who is going his own way and doing something contrary to what Dad wants for him. The son is entitled to his anger too. The strong adult reaction and support we have received from the grown grandson during this drama simply illustrates what a very fine job of parenting the son has done but he isn’t in a place to realize that just yet. Children grow up and do not fulfill your dreams for them. Instead they pursue their own dreams. It is easier to understand when you have already been through that life phase yourself. For some reason it is also easier for grandchildren to accept aging of grandparents. I suspect it is because the young are still young enough to think they are immortal.

Our daughter and another son came to visit and I was surprised to see how long they held on and hugged their father. They too have had their world rearranged. Yes, their father got lucky this time but what if next time it doesn’t go so well? What has felt best for me from the family support? What has comforted me the most? The long generous warm hug from one of my daughters-in-laws whose eyes say she understands mortality with her soul of great compassion. Being one step removed, she can stay detached. I have no need to comfort and reassure her. She comforts and reassures me instead.

We are so much more tender and caring of each other as husband and wife. There are many more “I love you”s and little pats and moments of pausing for a hug and more loving looks. Today, he actually put up that hook I had been waiting for since we moved into the house four years ago. It doesn’t make up for the fear. It serves to emphasize how much we have to lose. I keep feeling like I need to have a good cry but there are no tears.

I did get a bit of good advice from another friend who had a far worse stroke though she has made a really remarkable recovery. I mentioned again how the doctor had said how fortunate we were. She said, yes, she knew that feeling too. While she was in rehab she saw lots of examples of how much worse it could have been for her. However, she advises that it is important to let yourself get angry. Yes, you are lucky it wasn’t worse but it would have been even luckier to not have a stroke at all. You have to go through all the steps of mourning to get to finally accepting loss. It was strange to be told I had a right to be angry and feel loss but it certainly made me feel better. Our world has shrunk. So what if others have had it worse? We have still had a loss and we are entitled to mourn.

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