One partner has to outlive the other unless you commit suicide together. As a result, one partner will have to help the other live and die. What I mean by that is when your partner’s health starts to deteriorate significantly, it will be your job to help him/her enjoy as much life as they have left and yet also mentally prepare to die. Let me tell you folks, this is not an easy job!

My husband, as you know by now if you have read my previous posts, has a neurodegenerative disease that has greatly shortened his life expectency. His quality of life has decreased greatly over the last 2 years. He only eats through a feeding tube, he cannot walk more than a 1/4 of a mile without being in pain and his left arm is lame making everyday tasks very difficult for him. He has labile (greatly fluctuating) blood pressure and it often drops so low he could and does pass out and falls. There is not much left in life that brings him pleasure and left to his own accord, he would sit in a recliner ALL day and watch TV. Of course, this is not healthy for him and just makes him weaker by the day.

So, my job is to help him live. Without my help he could not really leave that recliner safely so I retired from work (early) and am devoting myself to keeping him as active as I can and supervising his daily routine so he does not forget things (like when to take his medicine) and I even have to remind him to eat (because he does not experience hunger anymore). The tricky part about this job is I have to keep myself alive also or I won’t be much of a caretaker!

One cannot have a terminal disease without thinking about the topic of medically assisted suicide. It is legal in many states in the US now to end your own life due to a terminal condition. Unfortunately, it is not legal in our state yet. We have discussed it, and he says when his quality of life is nearly zero he will want to take that route and exit this world on his own terms. I have no experience with this situation, but I imagine it is easier said than done once the moment really comes. We can go to another state to get the court’s permission or we can take matters into our own hands. In his case, he could just stop eating but I hear that is not a very pleasant way to die.

Helping someone to live is difficult also. They don’t have the energy to do it themselves, or at least my husband does not. I am the one who decided that going to the NC mountains for two months, where the temperature is 20 degrees lower than where we live in the summer, would be good for him. Now we can walk a couple times a day and the heat is not an issue. Packing us up for being away for 2 months was no easy feat but I did it! He certainly is getting to be more active in the mountains than he would have been at home and thus is extending his life by being here.

A difficult balance to achieve when being a caretaker is encouraging and urging your partner to make healthy decisions while being careful not to take away his feeling of control over his life and not becoming a constantly nagging partner. I have to gently urge him to push himself a little to get the benefit from the exercise and I have to respect his boundaries when he says he has had enough. This is very hard to do as a caretaker, especially when my personality is to be a control freak and when I know that exercise is the only thing he can do at this point to extend his life.

While trying to live as best we can, we also need to prepare for death. We have to get our wills, trusts, health care proxies and DNRs all taken care of. We have to make sure our finances are in good shape and we each have access to each other’s bank accounts, credit cards and other important accounts. We need to make sure we understand each other’s final wishes. There is a great document called the Five Wishes you might want to look at for this difficult task.

Yes, I am a caretaker for my partner. At some time you probably will be too. It might only be for a few weeks or a few months or it could be for a few years but whatever the case, we will need to either take care of our partner before death or be taken care of as we prepare for death ourselves. These are topics you probably don’t think about often and I know they are depressing topics. I do encourage you, however, to think about them so you are not blindsided by them when you are suddenly thrust into a situation of facing and planning for death. I used to say a sudden death was easy on the person who died but harder on the person who is left behind. Now, however, after living it, I am not sure which is worse — one powerful punch of grief or the slow, oozing release of grief as you watch your loved one die. Yes I know it is coming, but making the most of the time you have left is an oh so hard task to manage! I want to enjoy my partner’s presence in my life as long as possible and I want him to enjoy life as long as possible but the decisions I have to make daily to do this can be overwhelming. This is why I want you to think about these things before they happen. Old age certainly is not for cowards!