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Sunday, July 26, 2015

Your Dying Spouse 35 - Homebound

We're linked to Messy Marriage's Wedded Wednesday...drop by for some excellent marriage resources!

I think we all would like to maintain an active contact with the world around us until, literally, the day of our death. Unfortunately, that isn't the way the world works. Terminal illness is very often a long, slow decline, and eventually your husband or wife is going to become homebound.

Getting out and about for routine errands, and even for fun stuff like eating out, will become too painful, and excursions will be limited to the medically necessary. (I'm there, by the way, and don't even do the medical stuff...for three reasons...one. riding in a car hurts too much...two, no insurance...three, the docs have said that all they can offer is pain control, and I don't want to silt up my brain with narcotics.)

There are obvious risks to being homebound, as socialization is a use-it-or-lose it sort of thing. It's very easy to become a recluse, without the give-and-take and feedback (not always direct and personal) from the wider world.

Recluses are no fun. They lose perspective, and can easily become the center of their own nasty little universes. Terminal illness is not tragic, it's unfortunate, and it does not bestow entitlement. (It does demand and deserve consideration, which is not at all the same thing.)

So, how can you, the caregiver, help?

  • First and foremost, do not become a recluse yourself. Even if your homebound spouse demands (or seems to demand) your presence there every possible minute, draw a line, and nurture your own outside interests. Do be compassionate; your spouse is most likely reacting not from jealously controlling your company, but from a position of fear, the fear of loneliness which goes hand in hand with the fear of death. Be kind, but keep a place free for yourself.
  • Try to keep friends coming to the house on a regular basis. This will both keep your spouse's social muscles toned, and will help avoid the carelessness with which many recluses regard their appearance and personal care.
  • Most churches have a ministry team set up for the sick; let them know your situation. If your mate can't go to church, church can come to you. (There's also religious TV; I usually have the set tuned to one of the Trinity Broadcasting channels. They're not perfect, and regularly air programming which causes me to shout "False teacher! Bad pastor, BAD!" at the screen, but on the whole they do a good job.)
  • Encourage connection with a former job or profession, if possible; if your spouse had professional certification, encourage them to keep it current if possible, and not let it lapse from the "I'll never work at that again, so why bother?" mentality. (Again, a personal note - I was registered as a Professional Engineer, and for want of enough money to renew, let it lapse. I could not have done things differently, but still feel bad about it...I worked so hard for that!)
  • Encourage physical activity, and hobbies that 'have a purpose'. Doing crossword puzzles doesn't give you much by the end of the day, but building birdhouses provides a tangible, useful result.
  • Encourage reading, and don't begrudge the time it takes. This is not the time for "put that book down and talk to me!" The terminally ill need to escape.
  • Subscribe to Netflix, There are more great movies than ever available, and they can provide a surprisingly useful window on the world. Far better than television; commercial TV tends to be awful (and the commercials can emphasize the sense of losing touch with the world, in a very depressing way (been there!). PBS can be good, but many of the programmes take an atheistic view of the world, either explicitly or through an implicit downgrading of religious values. Atheistic propaganda is the last thing they dying need.
  • Get a dog. Dogs interact with people more than do any other domestic animal (well, horses are up there, but you can't really keep a horse in the house). The interaction demands involvement, and requires full participation. Dogs are also good listeners, and can give early warning of a medical crisis.
  • Read (depending on your beliefs) the Bible, Qu'ran, Torah, Bhagavad Gita, or Guru Granth Sahib together...every night, aloud. Hearing the words spoken brings them to life; speaking them yourself writes them on the heart.
And when your mate wants to bear the pain and go shopping with you, or just to the McDonald's on the corner for a cup of tea...don't be discouraging, for worry about how they might feel for the rest of the day if the outing's physically tough.

Because one of these days, there will be a last outing together.

17 comments:

  1. Good words, great advice.
    It's advice that applies to so many more people too - including singles who are tempted to isolate or those with painful and limiting illnesses like arthritis or ME. Pushing through the pain to engage with an outside world that might be unsympathetic or lacking understanding is still so necessary for our well being. But we like to avoid the pain if we can, and therein lies the challenge...

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    1. Absolutely right! Even shyness, if allowed to fester, can turn one into a recluse. This was beautifully described in Sylvester Stallone's "Rocky", in the part played by Talia Shire.

      And yes, we do like to avoid pain...even those of us, like me, who sometimes use toughness as a point of pride.

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  2. I can just picture you shouting at the TV!

    ;-}

    Your 9 suggestions are practical and positive. Good stuff, friend ...

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    1. Thanks, Linda! When I first saw your comment I was side-on to the screen, and read "shooting", rather than "shouting".

      Not that I have not been tempted...

      Thank you so much for being here. You are, and have been in my prayers.

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  3. Your series continues to be so wisdom-filled, Andrew. What a great book it would make, all the posts collected together. I just finished reading "Smoke Gets in Your Eyes: And Other Lessons from the Crematory" about how we do death and dying. I've got a feeling the author would love your series of posts and your outlook on it all.

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    1. Lisa, thank you so much! This will eventually be a book; if I live long enough it'll be these posts, expanded and organized into something more continuous than a collection of essays. If I die, they'll eventually go out the door as a collection of essays.

      Funny coincidence, reading your comment...I was thinking abut the whole funerary rite thing we have in this country, and how I really don't identify with it. My feeling is that the body is of no use after death, and should be disposed of in the most efficient manner possible, with no fanfare.

      It is, after all, the Klingon way...

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    2. I've wondered what your thoughts are of funerals. I'm not surprised you are of the Klingon persuasion. :) I've already told my husband that when I die, he's welcome to do whatever gives him the most comfort in disposing of my body. It will make no difference to me because I won't be needing it anymore!

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  4. These are some great ideas. Thank you for sharing them with us. Being in the ministry, reading your words gives us insight into how to better love our people. Thank you! (stopping by from #inspireMeMonday

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    1. I am so glad that I can be of help! That I have made a contribution to your work...I'm really delighted. You made my night!

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  5. Thanks for your ongoing effort to help those who are terminally ill as well as those who are caretakers. Each challenge and situation you've faced, Andrew, has provided rich insight and instruction for all of us. We have no guarantee of tomorrow, so I'm certain this will continue to be a place where many will turn for advice and wisdom. Thank you for bravely facing each day with your computer at the ready! It is always worth your effort and pain!

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    1. It's worth it to me, too, Beth. Coming here is sometimes physically hard, but the connection I feel, across these miles, with the people who visit is priceless.

      It's not the place or role I would have chosen, but as it happens, I am here. There are those who think I should complain, and protest to God...but why? Here is where my ministry lies. Should I destroy its meaning by railing against its existence?

      I think not. While I certainly can't count it all joy - I don't think even Paul could have counted the last sixty minutes or so anything but awful - I do count it meaningful.

      Thank you so much for being here!

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  6. I wish my grandmother had gotten Netflix or anything on TV to watch before her death. She just stopped doing anything. Even music would have been so good for her. I couldn't be there all the time, and she was so lonely.

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    1. It's easy to stop, Shelli, and hard to restart. And sometimes keeping one's emotional momentum requires a lot of work...I've had the experience of feeling that much of my life has become make-work, basically trying to find something to fill my days.

      That's deadly. It's very hard to recover from that kind of loneliness, that kind of sidelining from life. It's not really depression; it's changed perspective.

      It is, in the end, the individual's responsibility and choice to keep him or herself going. It can't be done for a person, though the actions of a caregiver can have a positive - or negative - effect.

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  7. Great advice, Andrew!! For both care-givers and care-receivers...it seems hard to keep up your own (as a care-giver) activities - and that is where I am. Whenever I tell my husband I am going somewhere/doing something, he looks so sad; when I return, he looks sad. But at this point, we DO go places and do some things - mostly the shopping or family stuff; he really doesn't have hobbies of his own except walking and fiddling with a card system of his high school alumni!

    Thanks as always...prayers continuing!!

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    1. The analogy can be taken too far, but it is kind of like being a lifeguard...you can't let someone pull you under, and if they try, you have to back-paddle away until they choose to cooperate.

      You're facing a situation that's hard; that he has no real hobbies or avocations is a tough thing to deal with, and unfortunately we can't give people hobbies!

      You're in my prayers, Barbara, and I truly appreciate yours.

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  8. More beautiful words of wisdom, my friend. Keep on writing and educating us!

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    1. Thank you so much! I will be here for as long as I can.

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