If, when you read this, you are fortunate enough not to have Alzheimer’s, or if you or your loved one is early enough in the disease that you are still able to make decisions, then if you take nothing more from anything I ever write, it will be a success to me. If your loved one is beyond that point, that’s ok. We were beyond the point. I so wish we hadn’t been, but we were. The elephant had been in the room for a very long time, but never had been addressed. By the time we finally convinced our father that a formal assessment was needed, mom was no longer mom. By in large, she was Alzheimer’s mom. (A-mom vs mom) So these discussions, specific to Alzheimer’s, were never held. (Broader discussions had been held many years prior and we were in agreement about all of the bigger issues.) Would it have been easy? Of course not. Would it have saved my father from some guilt in having to make them? Maybe, or at least maybe it would have lessened it somewhat. Would it have given us some assurance in our decisions? Absolutely.
The best of all worlds would be if we as individuals, and in conversation with our families and very close friends, would preemptively, if you will, make our wishes known on paper, perhaps even recorded (or both) and then put in a safety deposit box and others informed of their location. Here are some questions to get you started and keep in mind that Alzheimer’s Disease is just one of the things that could cause this to be put to good use.
1. What constitutes “heroic medical measures” to me? How does that definition change with any mental status decline?
2. At what point should I no longer be allowed to drive?
3. Who (and when) will someone else need to take care of my finances?
4. Who will be given the authority to make decisions for me when I no longer am able?
5. When would I want my significant other to stop caring for me at home for their sake and for mine?
6. If I am no longer able to feed myself and do not associate food with physical pleasure or recognize the signs of hunger, do I want to be fed through a tube?
7. Is there ever an appropriate time to stop some medications?
8. If I was no longer able to respond and I was not in pain, would I want antibiotics administered or intravenous fluids given?
9. How do I feel about “palliative care”? Or you may be asking what IS palliative care? (More on that in the future.)
10. And perhaps one of the most important questions any of us can ask ourselves is; do I have long-term care insurance? Do I need to get it? At what age do I need to obtain it? How does Medicare work if I need long-term care? Will my significant other/family struggle financially if I need long-term care someday? This is a delicate subject and while it is true that certainly not everyone can afford this type of coverage, it is a very serious topic and an expert you trust in the insurance industry should be consulted. (Perhaps a guest blog on the subject would be in order here someday very soon!) In the meantime you can find more information at www.amac.us or www.aarp.org
This is just the tip of the proverbial iceburg. You know how best to determine what is and is not important to you and your loved ones. Your beliefs, world view and other factors certainly need to be evaluated and considered. I would encourage you to discuss it in detail so that any questions can be addressed and people are not left to wonder what you really meant.
Here are some of the “lighter” things I would want my loved ones to know:
Take me to get my hair done once a week so I don’t embarrass you or myself.
Along that vein, have them pluck the hair on my chin or wherever it may be appearing by that time. I may have a fit. Ignore it. Bring someone into the house if I disturb the other clients.
Take me to get my nails done. If I no longer enjoy that, please do it for me even if I cry and say you are hurting me.
If my clothes look bad, but we are staying in, let me be. If we are going out change me so I don’t embarrass you. If I refuse or have a fit make a judgement call about whether or not to force the issue. Perhaps just get take out!
If I can no longer bathe myself or perform simple hygiene measures and refuse to be cooperative about that matter, then it is time to place me somewhere it will be done for me.
If I can’t wipe my own back-side then see previous point.
PLEASE make sure that said place has free flowing wine 24/7. Then we can just be happy all the time!
See, we didn’t know for sure what A-mom wanted. But we did know what mom would have wanted. But sometimes we did not want to force the issue because it caused her to be temporarily upset. But, do you know what probably the only upside is to Alzheimer’s? Soon they forget that they were upset. All is forgiven. Every day is new. That, my friends, is a blessing.