Shortly after LADA diagnosis at age 49, but particularly since my father's passing in July 2013, I have occasionally contemplated end of life issues. Primary among those is long term care, as in "to whom will I entrust the care of my Type 1 when I can no longer do it myself?"
I suppose the topic could/would be covered under a Health Care Directive, but the burden would be quite heavy for even the most well-intentioned individual. I am interested in hearing others' thoughts -- especially if you are in the GBLT community and (i) are unable to marry in your state and/or (ii) have no children -- as well as thoughts relating to what you have planned with respect to going on out on your own terms.
From those who do not wish to post their response publicly, I will welcome PM conversations.
Actually, yes, I was just thinking about it recently. I talked to my brother who is an attorney and 3 years older than me (69 to my 65) and he and his wife drew up papers recently, though neither have significant health problems. I'm not in the GBLT community but am single (and highly unlikely to change that at this point!) and have no children. I will have my brother appointed the executor or whatever you call it and my niece as backup in case he is no longer with us. He is going to bring the forms for me to look at during our next visit in July. I know what I want - if I am in a coma with no hope of recovery to have no unnecessary measures and/or "the plug pulled" but exactly how that looks legally I will have to see when we talk. Do you have some ideas for what you plan to do? (I am also willing to talk in e-mail if you don't want to talk on the forum, but I'm sure other people have thought about it as well).
Glad to know you are pursuing pre-planning and an Advanced Directive; it seems everyone knows it to be a task to be done but few follow through. I made arrangements before going abroad in 2006 -- but that was pre-T1 and when my dad was designated as having durable POA...
Post-T1, I don't quite know what to do. Ordinarily, a family might have at least a younger generation that would take on caretaker roles but none of my generation had children, so even the family name will disappear when my one sibling and two cousins are gone. I am therefore not concerned about asset disposition, but hope to have decent quality of life through long-term care (if such a thing is even attainable and/or affordable as a T1).
But, if that isn't possible, I should think keeping two pens available for injection ought to do the job...
Muragaki and Zoe, don't underestimate yourselves! I have Type 1 (and other autoimmune diseases) and am still taking care of myself at 83. My husband is 85 and has helped me out through some nasty lows, but I haven't needed that kind of help for years. I suppose we ought to do the Power of Attorney thing... Just be careful with the coma problem; be sure not to say you don't want treatment for a diabetic coma, because that might be able to be treated with glucose or insulin, as the case may be.
Yes, there's always that, though hopefully it won't come to that and we will all "live well until we die". My concern, though is if I'm not capable of taking action, in a vegetative state, or my own personal horror: aware but unable to move or speak :::shudder::::. I will pick my brother as my own POA because even though he's a couple years older, not younger, who knows what can happen. But I do like having someone I know and trust (my niece) in the next generation. For many years, though, I lived my life with little family contact but only a strong "family of friends". Nobody says the person has to be related, but that makes it all the more important to designate someone legally, so their word isn't discounted. I know this is a major concern in the LGBT community in states where gay marriage is still illegal. Do you have someone important to you in the younger generation who you could designate?
Wouldn't it be amazing if the T1 community could set up residences for T1's who are disabled through illness or advanced age, form a corporation and pay salaries for other younger T1's to be caretakers who are knowledgeable and supportive, or, getting really utopian about it form multi-generational communities of T1's where we would each contribute what we can and take what we need? It's hard sometimes living in a world where the nuclear family is seen as the only recognized or desired configuration. Sorry, waaaay off topic. Hope others chime in. I do think it is something to consider when we all know what a 24/7 job T1 is for those of sound mind and body and how scary it is to think of that ceasing to be the case. Especially for those of us who for whatever reason don't have someone to step in as "caretaker".
Ever since coming very close to death three years ago, I have had an Advanced Directive in place. I have also signed a "do not resuscitate" instructive with my hospital and clinic systems, and include DNR on my medic id bracelet
Zoe, your concerns -- being incapable of taking action, in a vegetative state, or being aware but unable to move or speak -- are precisely the scenarios that spurred the original post. I keep an unbelievably small circle of friends anyway, which is not of much help when combined with the absence of a younger generation...
And I don't think the discussion of care communities is off topic at all! In fact, there are such communities for GLBTs (although few and far between) -- but having such an option for GLBT T1s would be, well, Nirvana!
Trudy, you are so fortunate to have a Significant Other to help you with those lows! And echo Zoe as to the point of diabetic coma(s), although I believe that first responders are trained for the possibility of diabetic coma if it is clear through an emergency medical ID that the individual they responded for is a Diabetic. But perhaps I am being presumptuous.
Make no mistake, I am keen on the hope of being capable of self-care when in my 80s. But the absence of an attendant Mate or Significant Other or Caretaker creates a dilemma of sorts -- hence the original query, "to whom will I entrust the care of my Type 1 when I can no longer do it myself?"
I've sadly had to deal with this issue repeatedly over the last few months. Most recently I learned the hard way about communicating DNR and advance directives. I've been taking care of a relative for quite some time who collapsed while I was on travel and despite having left instructions with her aide, having already filed instructions with her doctor and the closest hospital, the situation still went awry. She collapsed, her aide called 911, but the EMT crew refused to accept my verbal instructions and there were no written instructions immediately available. So they needless resuscitated her and then to pile it all on, they refused to take her to the closest hospital where everything was on file, but to another hospital with a "better" cardiac center. I'm still a bit sad about the treatment my aunt received, she passed anyway and I feel like I let her down. In hindsight, putting advance directives and a DNR on an ID bracelet makes a lot of sense.
I haven't given it a thought, perhaps not a bad idea though. I like putting DNR on my bracelet. I need to get it reengraved as MrsAcidRock's phone number has changed...
After my father died, I truly understood the benefits of planning. Dad took it to an extreme, making and paying for all funeral costs. I always thought that was really odd, until he died the night Snowmaggedon hit DC. It took me a week to get to Iowa.
So, we have both put together a POA, will, and living will.
Spock, sorry to hear of your dad's passing. What a heartbreak, and then to have travel nightmares on top!
My father worked the same extreme as yours! Thankfully he had all mortuary arrangements made, not only in Colorado but also in Arizona where he eventually passed. Directives, POAs and Will were in place, too.
He was lucky enough that his girlfriend's retired status permitted her to care for him, something that would not have happened had he stayed in Colorado. And that's what I have been wondering about for myself, someone I could rely upon for that kind of care...
I have asked that question on Tu before. I have now had T1 for nearly 52 years, and my husband is my buddy, friend and support. I have no idea what would happen if I were alone.
I agree, Muragaki. Not to take on a "my situation is worse than your situation" stance, but it is different when you have a partner. It's funny but someone started a group for Type 1's living alone and I really felt I had little to say, that my D life wasn't significantly different solo (except for being able to eat what I want to eat when I want to eat it!). And in general, I'm ok with my single and childless life. I too am something of a solitary soul, and don't socialize all the time. But when I think about impending old age and perhaps being unable to easily accomplish the 24/7 management I now do, it is a bit intimidating. I too hope to be an independent 80 year old like Trudy and other wonderful people on here, but you never know what life will bring.
I went DNR about 5 years ago. I also decided 10 years ago to forgo dialysis of any type at any time. That was well before I saw the significant improvements in dialysis so I added a section stating that dialysis is permissible if my family feels it will be short in duration. It was added 5 years ago.
In addition, I made a specific decision about the order of decision making with regard to who woudl decide to terminate life support if needed. I of course listed my wife number 1, and then my tow sons by birth order. However, I made it clear if one was not available, in transit, incapacitated etc, then the decision was not to wait it was to fall to the next one available. If course if two or three were available they should consult each other but the ultimate decision was to be made by the oldest of the three reasonably available.
I also made it very clear that under no circumstances was one to judge another for making a decision, whatever that decision was. I trust all three implicitly and equally therefore none are to second guess another for a decision to remove life support.
For me when my mom in particular passed it was not clear what her wishes were and we my dad and I were left to determine who should make a decision and when. Obviously my dad was in control, but truthfully he wanted to vacate that responsibility and really the hospital did not allow that without an advanced directive with that written in.
Also when my dad passed, my step mother made all decisions and was not wish to consult me. My experience leads me to believe that the order of decision should be clear and that it should be absolute with consultation.
In both cases it was painful. In one case my father could hardly bear to say the words, that needed said and in the other my step mother had little interest in consultation.
Wow, Rick, a lot of lessons to glean here -- thank you for sharing. I like the structure you gave to decision-making, the dialysis stipulation, and the order-of-succession proviso.
I guess it all boils down to experience being the best guide for making one's own decisions, eh?
My dad was in Iowa. Once you check into the hospital, they put a very large orange card on you, with you, etc. would emergency or docs who have never seen the patient know any of your wishes. Even family, designated as decision makers have problems, unless they carry all the paperwork around 24/7.
ARs idea od DNR on a Medalert is interesting, but without paperwork, would that request be honored? The legal stuff is vital.
