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.