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5 years ago my wonderful husband was active, incredibly smart and very healthy. During a regular check-up, they noticed a heart murmur and it was discovered he had an aortic aneurysm. We went to several doctors and he chose a doctor who had great credentials and he liked (I thought he was a little arrogant but...surgeon.... ) Anyway, it was discovered he also had a bicuspid valve and one of them needed replacing even though he had absolutely no symptoms. He had open-heart surgery and valve replacement along with aneurysm repair and everything went well. About a year later he got very sick and it turned out he had a blood infection which in turn caused the valve to be destroyed - they did the Gold Standard test (TEE) 3 times before it actually showed that the infection had caused the valve to be destroyed and he was in heart failure. Because he was so weak they decided to do a TAVR as it was less invasive, to replace the valve. Everything seemed to go well - 6 months later he had his first of 6 strokes (2 of them were 2 weeks apart) and they kept telling me it wasn't the TAVR as they would do TEE's and it showed nothing but I kept telling them that it was the only thing that made sense. The only silver lining was that he had very few deficits from these strokes other than not being able to remember phone numbers but on his last hospital visit, I told the doctor we were living on borrowed time. If they couldn't find what was causing these stroke, he would either die or be totally incapacitated. On April 10, 2019, we had a wonderful day and when we got home, we were preparing to watch a movie and he collapsed with a massive stroke - he couldn't move anything on his left side and couldn't speak - he was rushed to the hospital and they were talking about surgery to remove the clot but within a couple of hours, he started to move on his own so they opted not to do the surgery as it could make it worse. When he was in ICU they did the TEE again and said it looked normal and the neurologist on-call said we should just take him home and watch him (keep in mind this is a very well known hospital that has a great reputation). I told the doctor I wasn't going to take him home to watch him have another stroke and was taking him to Mayo. After getting all his medical records and getting an appointment for 2 weeks later we went to MN to visit with a neurologist there. Within 48 hours they had found his TAVR was leaking from the back, causing the clots that caused the strokes. They had to do a 13-hour open-heart surgery and redo everything that had been done with the other hospital. Initially, although physically he was doing great, it was like dealing with a patient with severe dementia - I arranged cognitive speech therapy and some physical therapy (physical therapy wasn't needed for long). He is much better at this point but still not the same - his short-term memory is not good, his voice is much gruffer, he stays in bed all day watching television (something he never would have done in the past). I am relieved he is alive and as healthy as he can be given the circumstances but I feel very alone.

 

In December, his first therapist decided there was nothing more she could do for him and referred him to a therapist who specializes in cognitive impairment. She is very good and my husband is slowly improving in some areas so we'll see how it goes. Unfortunately, she is not on our medical plan so I have to pay out of pocket and my husband was self-employed so he has no disability coming in. I, of course, because of his history thought he would be able to get back to work so it took me till October to finally realize it may never happen and apply for Social Security Disability. He has 1800+ medical records so they still haven't gone through everything and with the virus, it will probably take even longer.

 

My issues right now seem to be grieving on and off for what we had - our relationship is no longer the close-knit, loving husband and wife (35 years) that we had but I always seem to be having to tell him what to do. He gets mad when I tell him to take a shower as he thinks he has already taken one - I also have to remind him every day to brush his teeth. He does take the pups for a walk most days as his therapist has told him he has to do that but, unless, he has an appointment he rarely gets dressed. He would hate seeing himself like this as we had many talks about it but he has no real awareness that there is anything wrong with him. Nobody really knows what to say because there is nothing they can do other than be there. My kids don't want to talk about it because he's their dad and it makes them uncomfortable discussing it with me (I have all boys). This morning we had the shower discussion again and I've let it go for 3 days but he insisted he took a shower yesterday and I reasoned with him that I had no reason to lie (I still don't know if he'll take the shower). We've tried a million things.....i.e., giving him a special towel so he can see if it's damp, having a checklist he can check off, etc., but he insists the towel is damp when it isn't and he checks it off even if he hasn't showered. I am seeing a therapist myself because I am so exhausted (physically and mentally) and, at times, get really depressed. I keep reminding myself that  I need to get used to my new normal but while I can convince myself of that intellectually, I am having a harder time convincing myself of that emotionally. Thanks for listening.

 

Anyway, just venting and introducing myself.  I sound like a really fun person, huh!

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Oh Bless you and there is no reason to apologize for your emotions . Would having a checklist, of sorts, that he checks off each activity like bathing or brushing his teeth?

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Yes, we have tried lists and items for him to check off. I even tried getting an Amazon Echo and putting reminders on his phone. He checks off everything even though he hasn't done it - Tells Alexa to be quiet and just turns off his reminders. It would be funny if it wasn't so sad

 

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Hi that all sounds so hard for both of you. Care giving is hard enough when the person you're caring for is fully aware of what's going on, but dementia adds a whole other burden.  If he is convinced he's done stuff he's going to tick them off his list no matter what sort of list it is. I'd guess you need to make his life as routine as possible. So every time you get out of bed you have a shower and you get dressed. doing it "yesterday" doesn't count.

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Routine is the way to go with dementia. What do we do when we get up? We have a shower, clean our teeth and get ready for breakfast and so on through the day. What do we do on Tuesdays? We put on clean clothes because it is the day we go to the shops and get our favourite beverage, with my Ray it was hot chocolate ( made cool so he didn't burn his mouth) and a muffin cut into quarters. What do we do on...days have to include a treat where possible as that is incentive. 

I looked after my husband for 13 years from 1999 when he had two major strokes four weeks apart which retired him and me to look after him. In 2006 he was diagnosed with  vascular dementia caused by the number of strokes and the amount of brain cells lost. I discovered a whole new way of living life. It was hard at first but better after I retrained ME. No expectations, praise whenever he did anything out no matter what it was. You put your glass in the sink, great, thank you so much. Good ol' positive feedback.

Know that once any skill has gone it is never coming back,even what is now you may lose after the next stroke. Ray had seven major strokes, minor ones with changes lasting either a few week or larger ones which gave him defecits that lasted the rest of his life in some cases. Nothing was the way it should be, the way it used to be or the way I wanted it to be but I loved him anyway. And for the past seven years I have missed him so much.

Bless you for caring enough to look after your husband. Remember to look after yourself too. We caregivers are precious.

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My pop (grandfather)had dementia and lived with us for a while.

It was very tough going, and I wasn't even his caregiver.

Thinking of you throughout this.

Don't worry at all about how you feel you sound.

To me, you sound like someone who needs to get it all off your chest, to people who get it.

That's us. We got you. 

💚

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I have some idea of what you must be going through from looking at my wife (I have the stroke, similar impact in many ways but much much milder).  Sounds like you are coping remarkably well with a really horrid situation.

 

The situation sucks.  And if you need to vent, you've come to the right place.

 

It sucks for all concerned.  So of course you get frustrated with the situation and with your husband.  It's natural and normal, so don't beat yourself up, that'll only make you feel worse.  My shrink's advice to both me and my wife was to acknowledge the pain and the grief and everything else, and to try to let it pass as quickly as possible.  The idea is that, over time, we will both be able tp accept this as the new normal and get on with our lives.  Not got there yet, but at least we live in hope 🙂

 

It is not easy.  Pat yourself on the back for getting this far, and keep congratulating yourself every day.

 

I use to run long distances, and one of the ways of keeping going while running for 10 or 11 hours, was to break the race up.  "Just to the next roadsign"; "to the top of this rise"; "to the next corner".  And then reset the goal to something achievable, like another roadsigns, hill, tree.  You break the journey down into "chewable chunks and biteable bits".  Sounds easier than it is in real life, but it *does* make these things bearable; focussing on the next 5 minutes rather than the next 5 years.

 

We try to use the same technique now.  "Another 5 minutes and only then will I scream";  "I can hang on for another 10 minutes", "I will bite my tongue for 30 seconds and only the say what I am feeling".  Remarkably, it gets easier and easier to reset the timer to stretch 2 minutes to 5, to 10, to tomorrow, to never.

 

We are both only human (well, I am am, not so sure about Linda, she definitely has a bunch of angel blood in her), these things don't always work, and when they don't, we you to forgive ourselves and each other (often only some time later).

 

The main thing, though, it that it sucks.  We get it,  And we are here for you, unconditionally.

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