<p>Coming alongside was one of the most difficult skills I learned at camp. Getting your boat in position downwind and sliding up slower than the other boat, but within arm’s reach. What a wonderful metaphor for life.
I hope we can come up alongside for as long as you need us.<br>
Or, as Simon and Garfunkel put it" We’re sailing right beside"</p>
<p>dragonmom, I didn’t know that it’s a boating term, but that’s a perfect description.</p>
<p>Thank you, everyone. I can feel the flotilla. So many of you have provided so much wisdom on this thread. As I’ve read your experiences and insights, I’ve often thought, “I hope it’s that way for us” or “I need to keep that in mind as we approach the end” or “That’s a perspective that will help.” So in a very real way, you are guiding me through this, and in turn, I’m guiding my family. I have a deep sense of peace that we are doing this in the way that’s right for us. So we all thank you.</p>
<p>I think Sunday will be decision day, whether to continue treatment or switch to comfort care.</p>
<p>I wanted to tell you something really valuable I learned today; maybe it will help someone else. </p>
<p>When I saw Dad on Thursday and Friday, my presence seemed to really agitate him. He was trying to tell me something, but his speech is now so garbled that I couldn’t understand him. So I just reassured him that he’s OK, tried to get him to close his eyes and sleep, then quickly left, not wanting to distress him.</p>
<p>On Saturday, the same thing happened, but I was able to pick up a couple of words and then it hit me – he was back at a job he had 50 years ago, and was trying to communicate an important directive. So I slipped into that world with him. He gave several “speeches” in an authoritative tone, moving his hands for emphasis. Every time he stopped I said, “I understand. Is there anything else?” and he’d go on for a little while longer. Finally he wound down, and after a pause he said relatively clearly, “Someone should announce that.” I said, “Consider it done.” Then he visibly relaxed, closed his eyes and went to sleep!</p>
<p>So I guess if the parent is just out there in la-la land, there’s really no point in trying to bring them back to earth or trying to reassure them that things are OK in our world, because they’re not here. From now on, if I can, I’ll just go with him wherever he is, and try to address his concerns in his reality.</p>
<p>What a valuable lesson that made things “easier” for both you and your father. He felt understood; you felt less frustrated and more comforting to your father. </p>
<p>We need to meet our parents where they are, as long as they are safe.</p>
<p>LasMa,
Right before my dad died, he entered into a state of well, delirium, I guess. It was the first clue we had that something was really, really wrong. Almost acted drunk at times. Saying inaproppriate things and things out of context. </p>
<p>I spent a week taking him to all of his doctors trying to figure out what was happening. Was it his kidney failure? Was it the new medication that he was on? Was it a stroke? it wasn’t until he died and the results came back from the CT scan he had hours before his death that we knew. He had a lung tumor that had never been diagnosed. Apparently lung cancer can put chemicals and hormones into your blood that effect brain function and cause this type of behavior.</p>
<p>The weird part of that whole thing was that I had never seen him more relaxed or happier than he was during those two weeks. He didn’t know how sick he was. We was lost in his own world and yet, a lot of the things he said were remarkably insightful and poignant. When my mom would leave the room, my dad would turn to me and tell me how much he adored her. He talked about things in my childhood that he had never told me. He said some crazy stuff too. For instance told me that he didn’t want to be remembered as a pineapple dessert! I told him that would be unlikely. I took a lot of comfort in trying to be where he was in his head. Even when it made no sense at all. Just reassuring him about whatever he expressed and validating his feelings was a comfort to him. I’m grateful that I could be there for that.</p>
<p>LasMa: sending lots of love & peace to you, your dad & your whole family.</p>
<p>I haven’t been on CC in over a month (unbelievable!) but during that time, DH & I made a trip to see his parents. It’s interesting to see my MIL in her natural place; dementia doesn’t look a thing like I thought it would. She’s “almost” OK earlier in the day, but by the evening she’s taken what ever thing has agitated her that day (mostly driven my TV) and wound it into a portion of her real life. Then in the morning, that thing is gone and a new one emerges. I found that Food Network is the best thing for her to watch.</p>
<p>Thanks to whomever made the suggestion about other meds for cholesterol, high blood pressure being overkill. I may try to find a way to bring this up gently with my FIL. Does anyone know of any articles about this that may be easy to share?</p>
<p>I came home with a somewhat greater appreciation for my mom, who has her own issues, but I explained to her that not knowing where you put the grocery list at 83 is not dementia.</p>
<p>^Some call this twilighting. Not uncommon for this to happen for some, at the end of the day. I don’t know if it’s biorhythms or the lessening light.</p>
<p>LasMa, with affection. You are strong and good.</p>
<p>LasMa, good luck. I was gone this weekend. Very interesting to meet your dad and be able to calm him by recognizing he is still a person thinking whatever he thought. </p>
<p>EPTR, for my Mom, when she lived alone, she got the life alert through her house security company, Monitronics. It was a waste of money. She set it off all the time because she wore it around her neck and made it go off by leaning against the kitchen sink to peer out the window. It was reassuring to ME though because I (probably mistakenly) thought if she fell she’d have sense enough to press it.
Now in the AL place she has one as well. Wears it all the time. The only times she has pressed the button were when I was on the phone with her and she was sick in one case and in pain from her leg in another case. I told her to press it and waited for the nurse to arrive. Both times they came quickly.
So you have to assess where your Mom is and how you think she could/would ACTUALLY use it. I don’t have a reference for a company though, sorry.</p>
<p>Thanks, Esobay.</p>
<p>My mom is still pretty functional and not apt to use it unless it is an emergency. Our concerns are around her balance. She has very severe scoliosis and, as she has gotten older, her spine is becoming more and more curved to the left. This causes her to bend to the right and tip that way when she loses her balance. Last week she fell twice. One time she was alone and had to pull herself over to a chair and pull herself up. The second time she was with my sister who had a very hard tome getting her off the floor. </p>
<p>She os nowhere near needing a nursing home or assisted living but it is all too easy to picture her falling and lying on the floor for hours or even days before anyone realized there was a problem.</p>
<p>EPTR: My brother & SIL got my mom a Life Alert. I know she is too stubborn to use it even if she has it on. My SIL thought they had discontinued it, but then the company started billing my mom. Don’t know how that switch was made, but I kept trying to tell that to SIL. This week, I’m going to unplug the unit and call the company with the number SIL gave me because my mom is no longer at the house. If you think your mom would actually use it, I suppose it would be fine. My mom is the type who would rather lie on the floor for hours.</p>
<p>EPTR, Reading your post about your mom’s balance brings to mind the excellent balance and fall prevention programs that a physical therapist could offer. If you work through her primary care physician she could ask for a referral to a PT. it would involve going to PT sessions 1 or 2 x weekly for several weeks to improve strength and balance. Many seniors can benefit from this sort of program and the literature shows that this helps with fall prevention, an excellent strategy for avoiding fractures. Fractures are the beginning of downfall physically for seniors.</p>
<p>EPTR - WBW has given excellent advice about fall prevention. But, with her having several falls of late, it might be time to think that assisted living or at least independent living in a retirement community may not be a bad idea.</p>
<p>Thank you, all. She lives in a senior citizen complex so lots of others around. </p>
<p>I have broached the subject of PT for her and she hasn’t agreed to it but I’ll keep trying. The Life Alert is just an added layer of security for her. I do think she would use it if she needed it. She has a cell phone but never has it on her person and in a panic might not use it correctly. I have to keep re-teaching her to hit the send button after dialing :)</p>
<p>She has osteoporosis along with the scoliosis so falling is a huge concern.</p>
<p>My mother has Vivint for her house. She has the necklace around her neck and does set it off accidently once in a while. She has fallen many times and it really has helped because even though she never got hurt when falling she can’t get up by herself. Even if she sets it off accidently, and uses a code to turn it off. Vivint will call her through a speaker and ask if she is alright. The company moniters her house for break-ins and fire also. They have always responded immediately and she and I really like it. Before that, we had set her up with a pendant that called me for help. But I am the only one around and if I went out of town she would have been stuck without help. I don’t know how much she pays for it.</p>
<p>My mom had one and used it for her final bad fall. It was around 11 PM at night. When the EMT’s arrived they refused to open the door b/c they were yelling in to her to ask her if the alarm was on. The company (I think lifealert) had her security code on file but had not or could not get it to the EMTs for some reason. Mom had to yell it out to them and by the time they got her to the hospital her bp was so high the admitting nurse said your bp can’t be this high or you would explode. I was not amused. Also they did call me (i was the listed one to call) during the event but they did not know where they took her. !!! I had to call a few hospitals in the area to find her!! (Of course later when I calmed down I realized she would go the hospital she went to last time but in the moment I couldn’t think which one it was). So. If you do have your mom use one make sure the company knows any security codes necessary and make sure if they call you to find out where they’ve taken her if she needs a trip to the ER!</p>
<p>Also to uninstall the thing we had to arrange a home visit and removal pickup. So we had to be at her house and have a service call a few months after she passed away - another detail of the estate.</p>
<p>Update: It looks like Dad is going to survive the infection. He’s a tough old bird! So back to skilled nursing he will go in a few days, if nothing else happens in the meantime.</p>
<p>My brothers have agreed that it’s time to back off from all-out medical intervention for future illnesses. For now, they want to move to non-invasive medical intervention. One brother will be here this weekend, and we’ll probably put Dad on comfort care only. </p>
<p>Today I again used my new-found technique of joining Dad in his world, and it’s actually a pretty cool place. :)</p>
<p>Your father’s resilience sounds alot like my mother. She’s had pneumonia several times over the past few years and has pulled through each time, even when it looked like she wouldn’t.</p>
<p>Glad for you that you and your brothers have agreed on how to care for your father going forward. One less stress.</p>
<p>LasMa, admiring your skills, perseverance and strength.</p>
<p>EPTR, we had a private word with the exercise instructor at my FIL’s senior residence. He began to include balance exercises in his 3x a week class. This doesn’t replace PT but it is a start.</p>
<p>If anyone is looking for other places where parents can get some balance support, check out cardiac/pulmonary rehab programs. My cardiac rehab program has special classes (included in the rehab fee) that work on balance. They are pretty popular. Was at an exercise ball class last night and folks were saying they could really use more balance work – and these were folks our age!</p>
<p>Dad’s been discharged from the hospital and sent back to skilled nursing. We wanted to send him directly to a Board & Care for the final stretch, but – how shall I put this delicately – he’d be hazardous to the other residents and staff. He needs a medical setting for now. Hopefully the infection will clear up altogether very soon, and we can send him to a homier, quieter place to finish out his life.</p>
<p>Both brothers have now signed on to comfort care only. One brother will be here this weekend, and we will be meeting with a rep from hospice. I’m hoping that will give him some comfort that we will not be in this alone. I’ll be here for the whole process, but he and my other brother won’t, so this will give them some idea of the road ahead, and the knowledge that Dad and the rest of us are in good hands.</p>
<p>The last week has been insane. Daily conversations with doctors, hourly emails with the brothers and teleconferences 3 nights in a row, all of us struggling to reach a decision which it was clear to me had to be made, and made in a hurry. Now that it has been made, that stress is completely gone, replaced by a heavy sadness. None of us is sleeping well, none of us can concentrate at work, and the stupidest things are getting to me. Like today at work the copier jammed, and it was all I could do not to burst into tears. I’ve officially begun the grieving process, I guess.</p>
<p>One brother emailed tonight: “The one bright spot in all this is how the family has come together to do what’s best for Dad. It doesn’t necessarily go that way for everyone.” He’s right, and I am so so so grateful.</p>