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blog wk 4-8-2013- By golly there is some positive stuff at the bottom, can you believe it?


nancyl

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well i followed that string of blogs as far as it could go.... even i got bored with mousing down to whee i last wrote...LOL so went to the funeral of my girlfriends daughter.... in the end she had cancer that had went undetected ( 29 yrs old) and had lowered her immune system so she was suceptable to pneumonia and the sepsis just overrode her system.... the news brought some relief to her mom... knowing her child would have suffered - this was quick... sad so young... but i am losing my husband one piece at a time so i think it is merciful to go quick... for everyone... this as i blogged earlier was the second person ( young) to die in the past week both of sepsis in one form or another.... today had the day that made him just stay in bed... i dont know why but we here in ND are not seeing spring.. it is cold, windy and overcast... plain out yucky... and i am sure this affects his mood as it does mine... everyday is such a battle as of late.. eat not eat, drink not drink, meds or no meds, bed or get out of bed.... he has been good in terms of eating and drinking and meds as of late.. but i know how fragile his decision making can be.... some say i need to be firm with him, and yes i have been and am when it comes to his safety... but the stroke wins every time... people misestimate his intelligence-- they think he is quiet, ... when in reality that is not the issue...he has his filler answers like -- So-So or OK - how are you? and that usually works for the greeting and so-so works for virtually any question... so sometimes i hear people say -- oh he is just playing you... but i dont think anyone is having a good time least of all dan... they just dont get it -- stroke wins every time.. if i yell at him and i have, it just shuts him down...if i try to explain - calmly he may or may not hear or understand me.. he catches word here and there and phrases... but mostly he is trapped in his own world, where he cant talk and for the most part understand... but every now and then we get a glimmer of the old man... the former Dan... and yes i keep mourning the loss of my husband as he was... and i am trying to adjust to this different dan... i love this different dan, but he is a difficult person to work with... and if i thought at all it was in his best interest i would look into a nursing home placement for him... but its not --- and doing that would ruin me - it ruin who i am and make me a bitter old lady....

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You just keep doing what is right for you and Dan, Nancy. We all have different points where it becomes unmanageable. You have an amazing capacity to handle a very difficult situation. I keep Lauren at home for the very same reason you gave. I know he is better off at home. No doubt about it. Lauren is much easier to get along with than your Dan, though, so even though I feel strained and stretched it is nothing like what you are going through.

 

When I was going through the process of consulting with the elder law attorney, someone told me to be prepared for him to tell me that I would need to get a divorce to protect our assets. The attorney didn't even mention that but just the suggestion that it might come up sent me into a major tailspin. I thought about it long and hard and came to the conclusion that making that decision would ruin me too. It was a complete no-go for me, no matter the financial consequences. I think it's important to know what choices are just not going to work for us, for now. We can never project into the future enough to know whether that decision will feel differently at another time. But for now, no.

 

I certainly agree that Dan isn't having a good time. It's hard to know what his motivations are, if there are any conscious motivations at all. It seems clear that it is not to have a good time. At one point I think you mentioned fear as something that was underneath a lot of his behavior. It seems reasonable to me that fear is a factor.

 

I'm going to keep saying this though: take some time for yourself. I hope you're doing that. I'm glad you got to the funeral of your friends' daughter. Not a good time, I'm sure, but important and something you wanted to do. I'm not going to accept that you can't do things for yourself (I say this gently and with love :)). You must. Start with 15 minutes if that's all you get, but make those 15 minutes count for something that is life-giving to you. That may be a nap right now but it needs to be something. You need to keep Dan at home. In order to do that, you must give yourself some care. It's not an indulgence; it's every bit as important to Dan's well-being as his medicine and food and drink is. Lecture over. (Yes, I do know these words are as much for me as for you!)

 

~~Donna

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You know I get so many people on here who tell me what a great job I am doing with Cayden but I think I have it so much easier with Cayden because his stroke happened before he had his own personality and I get to see him for who he is but to listen to yall having had a person with a certain personality and the stroke change them I think yall are the best people. To stay with the loved ones and care for them and continue to love them no matter what. Being a caregiver not just to my son but as a career I see too many family members leave the people they are suppose to love because of a personality change whether due to stroke or alzheimers. Caydens grandma's on both sides of the family are missing out on a wonderful boy and I think your spouses are very lucky to have such loving people to stick by them. I wouldnt be too hard on yourselves I know it cant be easy all the time but love is worth it right?

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So long as you do what you can and you know he is not in due need I think all is well. My wife knows I will do all I can and I'm just happy to be alive knowing she will do me right. I'd rather be in my own home and I think she would rather I be here too. So I hope not to get any worse any time soon.

 

When I'm unable to drive or use my scooter then other considerations I may have to consider.

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Nancy: going to share something from two years back. Bruce's caregiver, Leo, was sure Bruce was incontinent on purpose. Defiant, so to speak, a control issue. But I know my Bruce and the one thing he never was/is is evil or punishing. Mary Beth lives with punishing. I know that world.

 

They just don't think that complexly anymore. And like Bruce, Dan always was complex. How hard is that for you and I. There are no layers anymore: it is right now, this time! And we learn, as recovery continues how to deal with that. Bruce asked me today for a cup. Usually there are cups in his fridge, but he ran out. Nancy, the kitchen is right behind him and cups are on the microwave - totally in reach. I had to say "Honey, back into the kitchen and get a cup." The night Pema was called away on an emergency, Bruce sat for three hours - did not feed Kira (that is major), no phone call to me, no one got his mail (that is major) and no dinner for Bruce. Just "waiting for my Ethyl."

 

My fault, probably. I don't demand problem-solving because I have to balance that with safety. But I have recognized it and am working on it. He was so impulsive early on I probably beat it out of him now. He is afraid of upsetting me. But I can't go backwards and change that. I have to deal with what I have now.

 

Like you, I have figured out that the same old explanations - regardless of how they are presented - get the "Yes, I know" response. But no change in behavior. And shut down is the worst! They don't even hear you anymore. If their speech was intact, they would hand you back exactly what they have heard from you these past years. Yes, there is understanding, but they have already decided they can't do it. And don't ask "why" because the answer is always "I don't know." And in fairness, they really don't.

 

So we change tactics, try a different approach. See what works, where they understand and are wiling to work. I found out just this week, Bruce will not come into the kitchen for meal prep "I don't dare" (how sad and bad me) unless I ask. But he loves being out there. So while it takes more time and energy, I do it - now every single night if I am home. We reap what we sow.

 

Baby steps, lots of thought and reflection at a much simplier level. Prayers always, Debbie

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we had a good day today... nice to see "that dan" --- i wonder who wakes up tomorrow.??? had a nuearolgy appt today... got a psychiatst appt in July -- the psychologist appt later this month ... and the nuerologist is gonna review all of dans hospital info ref... the open carotid... and yep its rare ( we knew that) ... but we are both doubtful it will mean much in the end, but hey who can tell right? her biggest recommendation hit the speech as hard as you can... we are , today was a lot of fun... and it is so nice to write something positive... we did sams club, ate at red lobster our daughter also had endoscope done and a bravo device put in to see why she is having so much stomach difficulties... that went pretty well for her.. so we will see if that gives the doc any info and then i need to concentrate on beth a little and her hives... apparently there is a specialist down in the cities-- that is good with enviormantal allegies so i guess we can even self referral so i need to get on that as well.... i asked the nuerologist if she though dan would benfit from a more specialized nuero for his newly ( we think newly) opened artery and she said she doesent know anyone... and i believe her... she isent a vain doc and would gladly pass us on but she just doesent know anyone that would be of any practical help... and if he is just gonna be a guienny pig ( spelled that wrong) than the aggravation and pure ticking dan off is NOT worth it... and his films can go any where i dont care- who see them... but his body i think will stay here...reap what we sow as debbie reminded me.... but darn my crop is not doing well this year... lets hope this is a building year...

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Glad to hear things are finally calming down! Funny how after two years, all of a sudden a flurry of activity. The psychologist and psychiatrist are great additions to your repertoire, Ray and I were sort of stagnating but ours really stirred the pot. Ray's even using his cane a bit, never thought I'd see the day.

 

Oh well, someone else would tell you that you need bad days so you can appreciate the good; I don't totally agree but guess there's a kernal of truth there!

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Nancy, you must have a strong back because the load you carry is impossibly heavy. I wish you and Dan the best, maybe when and if we ever get summer the attitude will improve. Prayers to you both.

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had another decent day... about time .... i rented a motel room and sat in the hot tub... had a drink or two.. a few friends and family.. dan sat and watched TV in the room--- i had poolside so i could keep a eye on him, and him on me LOL... we had supper -- of course he ate what i ordered and i got stuck with his order... LOL.... and then home-- sleeping at the motel didnt appeal to me i like my own bed as does dan... but i did take some recreational time and just enjoyed myself... OHHHH so nice to write something positive and not whining all the time... i got so i couldnt stand me... dan had a ppt. with his new Doc -- she is a internal medicine doc... and we are starting him on prozac and pradaxa-- getting rid of the coumadin... the nuero is on board with all, but wanted the new Doc to make the decision since a Pulmonary embolism is always a fear... the pradaxa is a bit scary but not affected by the nutrition issues the way coumadin is... so for dan it is a safer med... hers to hoping for a better life ahead... cause, man it could not have gotten worse.... nice to see "this " dan...

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Excellent! What creativity in getting something you need while also attending to Dan. Just excellent! I hope a new doctor can see a new way to treat Dan that will turn things around. You are certainly due for a turn-around. ~~Donna

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