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calite (@calite)

Husband with OCD, Bipolar, Epilepsy and Brain injury

Caregivers | Last Active: Apr 9, 2019 | Replies (11)

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@peggyella

Hello. I hesitated to reply only because my husband doesn’t seem to acknowledge that he has dementia, major depression and major anxiety disorder from a hemorrhagic stroke (an aneurism burst in his brain) nearly 5 years ago. But I know this site is secure, so I’ve been thinking about you and want to offer some hope.

My husband was a very successful top State executive at age 62 when he suddenly had the stroke. He had lifted weights three days a week since he was 14 and has never smoked. He’s had cancer 5 times including twice with melanoma and his last surgery was in December 2018. Several years ago he had spinal sepsis that almost killed him but it didn’t. I changed his IV every 8 hours after he was released from a month in the hospital. So sometimes there’s no rhyme or reason to things. We can blame it on genetics or bad luck. It doesn’t really matter because it all boils down to having to deal with reality and yet still having faith.

I can completely relate as a wife of 25 years to the sadness, fear, insecurity, and frustration you must be feeling. We ask ourselves, “Will I ever see the man I married again?” I am so sorry for your loss. I would like to encourage you with this… Dementia is supposed to get WORSE, not better! but he has IMPROVED!

In some ways, my husband is worse. He’s more withdrawn where in his executive position he frequently held press conferences on television. He is more moody than in the past, gets extremely anxious over minor things, and simple things often confuse him. Hang on… I’m getting to the good news.

On the other hand, he is still very intelligent, compassionate and affectionate. Sometimes his mood swings drive me up the wall or his tantrum over something so minor can frustrate or even anger me. I have to remember all the time that he cannot help it. And that I’m human and not perfect. So I pray a lot. My faith in God sustains me and his grace is sufficient.

Certain things have IMPROVED and should not have… His driving was so bad that I had to hide the keys from him because he would not obey his doctor’s orders not to drive. For a man of only 62, that was a hard hit to the pride and it was extremely difficult to deal with but I was afraid he would kill himself or both of us or someone else if I did not do what the doctor said and take his keys. Over time though, as I drove him places and then let him drive, with me accompanying him, he actually IMPROVED his driving to the point that I gave the keys back to him! Now he very careful drives himself anywhere he wants to go locally. I still don’t trust him to go a long distance or out of town by himself.

In the beginning, he could not follow the most simple instructions about anything. For someone with a masters degree, it made me very sad to see him unable to put a lawnchair together. But that has improved drastically and he recently ripped out the floors in our house to replace the wood with tile. He also painted the interior and it looks fantastic. He tires quickly so I have to be extra patient.

About two years after the stroke, his anxiety would drive him to the point that he began to put his hands on me when he was upset about something. He would never hit me of course… Or I would’ve had to deck him! Not really. I had to leave him for a week because he would pull on my arm to get me to go somewhere. As I said, he worked out all his life, so he’s very strong. I’m 5’ and have osteoporosis among other things. My bones break easily and I couldn’t get him to stop. Nor would he agree to see his neurologist for treatment of the depression, anxiety or dementia. So when I talked to him after leaving him that week, he finally agreed to see the doctor and take medication. He’s on an anti-anxiety and antidepressant which has required tweaking. It is still challenging from day today but overall, he is much, much better than he was!

I’d like to share another thing that I consider a MIRACLE. When he had the stroke he had been a musician all his life. He had been in a band when he was 14 and he and some friends formed another band several years back. They practice weekly and play every month or so at a private party or club. They are actually extremely good and played New Year’s Eve 2018. Their new CD is coming out soon! Well, when he had the stroke, he forgot how to play even one cord on his guitar. It broke my heart. But do you know that within eight weeks he was back in concert for that New Year’s Eve? He has been playing daily ever since then and it has been over four years.

So we cannot always count 100% on what a prognosis is for any particular patient. My husband should’ve gotten much worse by now, but he has improved which is against medical facts. We do have to except reality sometimes, but remember that miracles still happen. God bless you. Peggy

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Replies to "Hello. I hesitated to reply only because my husband doesn’t seem to acknowledge that he has..."

What a positive story about doing the best you can for the circumstances. I love that the music playing is helping keep the brain in better shape and it encourages me to play hymns on the piano for enjoyment and good mental health. We try everything we can think of to improve our condition and sometimes it actually produces good results. You are a blessed family in a special way. Dorisena

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