Bethel

Apparently my step son ran into him a few days ago and invited him to the meeting also. Except step son mixed up the day and told brother in law the meeting was tomorrow. A little bit of schadenfreuden here, because if the brother in law had called me for confirmation/details as I had asked him to then of course he would have been able to confirm the correct time! Step son and his partner brought our four and a half year old grandchild..... and when the discussion got heated my step son's partner took her out of the room at my request. She wasn't too happy about it... but she did it. The kids seem to all be in agreement with me being in charge, and have at least given lip service to the need to have Steve's diet and medications VERY carefully monitored now. I'm not 100% sure they quite understand what that means but at least they expressed a willingness to try. At one point step son's partner said she knew all about diabetes since her mom is a diabetic..... and I pointed out that this is a bit beyond that. Steve needs 60 carbs per meal, his insulin needs to be adjusted according to his blood sugar (test 5x a day, shoot insulin at least 3x a day), he can't eat any high cholesterol items, or high sodium, etc... and she breezily said "Well, I can just look all that up on the internet!" (LOLLz. Ya. A specialized diet can SOoooo easily be looked up on some random internet site! ) But I was good and said "Or you could just ask me.... " (a comment which made the psychologist smile) I also invited them to go to the VA dietician with us next time so they can ask questions and learn. They agreed that might be a good idea. So there is hope there. The biggest issue that came up wasn't much of a surprise.... Steve has been telling me that he is perfectly fine with having me and my partner live in a small building at the back of our property. He is cool with us fixing it up in to a little liveable cabin.... Or so he has been telling me. Step son, however, has not been so cool with it, and has had a few discussions behind my back with his dad. According to step son his Dad is *not* cool with me "moving my boyfriend into the house" OK Kid, but if you had asked me first you would have found out that isn't what we were planning anyhow.... Step son also thinks he has the right to tell me that I can't ever have my partner anywhere on the property.... because "it's weird!" Well, Boy-o, sorry, but you *don't* get to make *that* call! Also, since Steve did say at the meeting that he *had* told me it was OK to have my partner live on the property, and he also had told my step son he was not cool with it.... clearly, Steve is malleable when it comes to opinions about what is going on, etc. Which means he is one hell of a lot more vulnerable than people realize. But I was able to clarify that my partner is not intending to move into the main house, and further, that if I am going to survive being Steve's caregiver then I need the support of my partner, since he is the person who has been helping me get through all this crap. However, we *all* realize that it is awkward to say the least, and my partner and I have been working with Steve's feelings in mind all along. I was a good girl and did not tell my step son and his partner what royal jerks I think they are for assuming I was simply moving my "boyfriend" in without so much as considering all these complications! We talked about the brother in law for a bit... The psychologist wants to talk to him privately, and I told him straight up that I wasn't in agreement with that. The BIL has been HIGHLY toxic, and I told everyone that when the BIL and SIL betrayed my trust and ramped Steve up with all kinds of fears that I was out to do him wrong, that it triggered my PTSD and I wasn't able to even leave the house for three days. (oh ya... a big part of what I am dealing with is a lawsuit against my former school. It involves sexual harassment, and a sexual assault by a professor. When I reported him they did a sh*TTy job to say the least. ... and believed every word out of his golden mouth.... this is where the PTSD comes from. So issues of trust and safety are HUGE for me... hence the need for my partner to continue to be my support through all this) I explained that I simply *can't* have someone so toxic involved with Steve right now. And I allowed that *if* my brother in law apologizes to my face for the actions of his wife and himself, then I would consent to visits with Steve as long as I was also there. I do not trust them to visit Steve without me around. So, all in all... not the worst meeting.... It was rough, but we got through it.

Well, I went ahead and scheduled a second family meeting with Steve’s psychologist. It is happening tomorrow. I have invited our son, my husband’s older son and his partner, and I also invited my brother in law and his wife. Anyhow, it looks like my step son and his partner will be at tomorrow’s meeting. The brother in law and wife haven’t even responded to my invite so they might or might not be there. Step son and partner are firmly in denial, and will say yes that Steve has dementia, but are militant about learning the first thing about what that actually MEANS. They have supported Steve’s wish to keep driving, and have repeatedly told him that I was (similar to BIL) trying to just control everything. Further, Step son and partner refuse to believe that Steve’s diet is key to preventing further strokes, and just today fed him a breakfast of eggs, cheese, and sausage! Step son’s partner also made a plan to take Steve to Canada without including me in the planning OR the trip! Well.. THAT plan was squashed…. Pretty sure THAT will come up in tomorrow’s meeting. Brother in law and wife have been extremely toxic. To my face they pretended believe me a couple of months ago when I called and warned them of Steve’s impending dementia diagnosis. Instead of waiting for all the information and the official verified diagnosis they called Steve and ramped him up about how he doesn’t have dementia, and how I am evil and am just trying to “get everything and throw (Steve) out on the street” Now, it is true that Steve and I were separated. But that was because of the way Steve has been treating me for the past few years – behaviors which were probably due to the early stages of his dementia. And it is true that I have a new partner in the picture. Nevertheless… I have ALWAYS been dedicated to Steve’s care, immediately after the obvious strokes he had two years ago and even more so now that he has vascular dementia. No one else has taken care of Steve. Not only that, but the idea that there is anything to “get” that I don’t already own is pure fantasy. Frankly I hope Brother in Law and wife don’t show. That way I can say to their face that they ignored the invite and thus can’t participate at all in anything involving Steve unless I am included, since Steve’s safety is important and they have chosen not to learn of Steve’s condition and how it affects his behavior. (subtext that their behavior is toxic and they can go fly a kite for all I care) I would be happy if step son and his partner didn’t show too…. but I don’t think that will happen. As it is there will be tension over the dementia diagnosis itself, the fact that I have moved back into the house, step son’s blaming of many things on his younger brother (dirty house, un-mowed lawn, etc) as if step son had jumped right in and helped…. (clue: he hasn’t! and he’s been around town MUCH longer than younger brother!) Oh, and I fully expect to be told by step son and partner that I “can’t blame everything on the dementia” and that going to school to finish my degree was what caused Steve to say I left him… and I should not have expected people to think it was OK for me to try and get an education when my husband needed me. (yes, I have already heard these things before! That’s why I’m pretty certain they will crop up tomorrow.) Oh, and at some point the very existence of my new partner will probably be thrown in my face as a reason I am a bad person and don’t know what I am doing taking care of Steve. This new partner has kept me from killing myself when things were at their worst (literally). He is also working on the house to fix up things that step son could have done but can’t be bothered to do. He is ON BOARD with the things Steve needs, and is willing to support me through whatever I need. So his existence is actually a plus for Steve, and Steve has said exactly that. In any case this is the last family meeting I will send out invites to. Anyone who doesn’t show will automatically be assumed to not want to help. So, I guess, advice is probably just to roll with things…. But I could use a little bit of luck if anyone wants to send some my way.

Steve has forgotten many small things. But the Corolla was the first big thing. Our friends hadn't seen Steve in a couple of years, and they drove down from BC to see him especially to check since I had called and told them Steve has been diagnosed with dementia. And check they did! I purposely allowed time for our friends to discuss things without me around. They asked my son about my new partner Drew, what kind of man he was, did Martin like him, etc. They asked Steve questions which dug up without my supervision some obvious memory deficits. And they met Drew and (provisionally) welcomed him into the fold. They also noted that Steve did not think to take his insulin and blood sugar monitor when they went shopping. (a five hour trip!). And they noted that I was vigilat about checking and then insisting Steve take his meds. So it was a good visit. And our friends showed that they are true friends, checking to see waht's really true and supporting both of us.

Today some old friends came to visit. They took Steve to Costco and Trader Joes while Martin, Drew, and I continued cleaning. At some point in their visit the old friends mentioned to Steve the '02 Toyota Corolla we sold last year. Steve had no memory of that car at all. We owned it for almost ten years and as far as Steve is concerned it never existed. And that, my friends, is how you can tell the difference between a normally aging memory and dementia. Because a car you sold only a year ago, and drove for almost ten years, should still be available to be easily recalled when a friend mentions it.

Sue, I rolled over many responses before I decided to post this one. Everything I thought of to say just sounded trite. Things will get easier when you are used to the now routine, etc. But it all just sounded hollow. So I just want to say I'm rooting for you and Ray, and I hope I'm as strong as you are when my Steve gets to the point of needing full time care.

As long as there are tests, there will be prayer in school! :p

There is a rap artist named K'Naan who has an amazing song called "Take a minute" It starts with these words And any man who knows a thing knows He knows not a damn, damn thing at all And every time I felt the hurt And I felt the givin' gettin' me up off the wall I'm just gonna take a minute and let it ride I'm just gonna take a minute and let it breeze I'm just gonna take a minute and let it ride I'm just gonna take a minute and let it breeze It's an excellent song. K'Naan is probably the best poet of his generation. And the advice here? I've been rolling it over and over in my head these days.... The song can be heard here: It's beautiful. Certainly worth a listen.

I copied this from Rachel, with only a few edits. I am sharing here because it is excellent advice! A person who tsk-tsks the behavior, the decisions, the commitment of a caregiver, and/OR a person who sabotages, subverts and/or shrug-offs what caregivers do has a perception problem. This perception problem might be caused by any of the following issues: #1. They are a person who has never been a caregiver #2. They are a deluded, "perfect" caregiver who believes their way is the "perfect" way #3. They are a person who gossips and criticizes because they don't have a life #4. They are a nasty person who gets their jollies by putting down other people #5. They are a person who, personally, doesn't like the caregiver (for whatever reason) #6. They are a person who is so competitive that they never miss an opportunity to make another person feel dumb, wrong, or inferior. #7. They are a person who always chooses easy, selfish, pop, instant gratification (I am talking about a person who knowingly pushes a cupcake on a diabetic, offers a drink to a recovering alcoholic etc...."just one won't hurt." If you feel up to it, I recommend that this type of person should be firmly reprimanded and told to cease their behavior immediately.) Yes, it is always wise to be always open to suggestions and observations, but it is the sad, awful truth that mostly what caregivers get is useless, prejudiced, naive, often painful, insulting poopy advice from relatives, friends and the general public. Remember: Bullshit belongs on the begonias!

Oh my gosh, Sue! I've been so selfish with my concerns re: Steve that I hadn't stopped in to check your blog. And this is the first one I've read! (will subscribe now) Wow! I am So SORRY to hear that you are at this point. But you are here YEARS after it would have been needed had you not been such a good and devoted caregiver! I know the fog is difficult, and moving to this stage is never what you would have wanted (for myself I'm still pretty damn *beep* at the daugher-in-law who two days ago "reassured" me that I shoud be *happy* to have a roof over my head... as if a roof over my head was somehow a nearly-deserved prize for caretaking Steve!) You are a GOOD caregiver, and you are STILL a caregiver. NOT a "former" caregiver. I worked in two different nursing homes when I was younger. One thing I learned from my work there is that having a loving, caring person involved in the life of a person in a nursing home makes ALL THE DIFFERENCE. You ARE a caregiver. Even if the exact geographical location of the person you are caring for has changed. With luck, and a great deal of perseverence, I hope to make it as far with Steve as you have made it with your Ray.

Update: in the few hours since I posted this TWO Facebook friends (people I know in real life.... and who know Steve) spoke up about how dementia (in one case stroke-related vascular dementia) has been a big issue in their life. One in particular *thanked* me for being so open and honest about what is going on with Steve. So ya. His own son can't handle it. But my posts have helped at TWO younger people to handle what is going on in their families. Also PS to HostSue: I am a very outspoken, almost militant, activist for quite a few causes. I come pre-stirred up. :p