Where to find a caretaker support group, and how do I go about it? I can't drive!

Ok, I've typed and deleted three times because I kept coming back to one key point. Life can change on a dime, especially with health issues. You can gnash and wail and ask "why me" and "what else is going to happen" but where you are is where you are. So in order to move forward, you have to accept that this is where you both are right now. It doesn't mean this is where you will remain, only that this is where you go from. Right now, it doesn't sound like travel is possible. Right now, someone is not taking you out to dinner. Right now, you need to figure out how to get groceries and run errands. Right now, you're overwhelmed and your husband is dealing with some significant changes in his life. Here's where I'm coming from - my husband is due to retire in a year and last year he was diagnosed with Parkinson's. PD affects everything - speech, walking, writing, memory, everything. Our friends are planning cruises, we head to Ihop and the grocery store. His buddies are golfing, he's trying to find shoes that don't hurt. So I'm not thinking that traveling is in our future either. But we're adapting and finding things he CAN do, that we can do. He can't golf but he can have the guys over for poker. We make plans knowing he may cancel at the last minute, but we still make plans. Because he needs to have as much normal in his life as he can, for his emotional and mental well being. For now, I'd say take this one day at a time, savoring the little joys each day brings and work on baby steps with this new normal. Your life may not be as you planned, but you may also find some joys you never expected.

A caregiver support group is an excellent idea! Ask the social worker at the hospital that treated your husband, search online, check "events" columns in local newspapers. Then take a cab, or investigate any senior transportation options in your community. You may even discover a member who lives not far from you and you can carpool. Don't let lack of driving keep you from this valuable resource.

fairygal, you don't say how old you are or what your husband's prognosis is. It is definitely a blow when you hit the "in sickness" part of the marriage deal. You are wise to acknowledge that loss, and give yourself permission to feel bad about lost opportunities. That is one good reason to go to a support group -- other people are dealing with those losses, too.

You may get to the Black Hills someday. If he improves and as you get more comfortable with caring for him you might possibly go with him, with someone else along to help out. It is also possible you'll need some respite time away from caregiving and you'll arrange a trip with a cousin or a good friend or sign up for a commercial bus tour. And you may do these things after your husband passes.

Your life is very definitely different than the two of you envisioned it. That is sad. Your life is not over. You will have many good experiences ahead, if you plan for them.

Good luck in locating a caregiving support group. They are terrific!

Another thought, for just local travel ... how are you getting to doctor's appointments? Is there a small bus, on-demand program in your area?

Blannie's right - I've collected literature at AAA Expos on companies that provide transporation for disabled folks.

There's also a whole disabled travel industry - google "disabled travel" and you'll see a whole list of travel groups and websites who specialize in travel for folks with limited physical abilities. The first one I looked at was a couple (who do tours all over the world) where the man is a quadriplegic, so it CAN be done!

Garden Artist has some great suggestions. Start looking and dreaming again - if you really want to travel, you can do it!

Let's see if we can think about this differently.

First, to find a support group Google support groups in the area in which you live, contact all the hospitals and ask them if they have support groups (one local hospital here has a stroke support group that meets monthly) and contact the national epilepsy association or other local epilepsy groups (you wrote in your other post that you have epilepsy).

I assume you're taking meds for epilepsy but that it's the issue of your husband's feeding tube that prevents travel complications, in your mind.

Second, there may be some options through local senior centers. Every one in this area plans bus trips for seniors, and some even plan overseas trips.

Third, I think it's a bit too early to be so conclusive on the issue of no travel, but I certainly understand that everything must be overwhelming right now.

You don't need to make any long term decisions yet; give yourself and your husband both time to acclimate to his new constraints.

Fourth, is he getting speech therapy? If not, ask your primary care physician or whoever treated him for the stroke and recovery for a script to start it, if that doctor believes it is physically possible.

Ask also if she/he has any recommendations on safe travel.

How are you communicating with your husband now?

Fifth, I wouldn't think traveling with a lot of meds would be the issue; just put them all in a bag with a separate backup bag, and take the pill containers with them.

Sixth, taking the cans would be an extra inconvenience, but you could compensate by taking less clothing or other stuff.

Seventh, do some research on how Veterans are coping and managing their disabilities. Some of them are coming home with far worse injuries than are imaginable, yet they're finding ways to deal with their situations, not easily, but they're trying.

Eighth, Pam makes a good point on medical coverage. Are you on Medicare or some type of private coverage insurance? Contact them and ask about out of town or out of state travel and find out their positions. Medicare will certainly cover out of state medical events if they're covered under Medicare in the first place. My parents got Medicare treatment here and in the South when they were Winter travelers.

But really, don't try to accomplish everything at once. You still need time to adjust to this new situation. And, how does your husband feel about all this? It's really a 50-50 decision.

EYE ROLL!

dusty flips out on us every now and then with the brimstone and the wrath, fairy, but she has good input at times too ..
love ya dusty . you stimulate the reptile brain in me and frankly, i need that.
ill take you to the black hills someday fairy but not while all those jerky, biker wannabes are there..

Unless you hire a driver, and a PCA who can travel, I just don't see it happening. Plus you factor in whether or not your medical coverage will cross state lines. If either one of you has a medical emergency, you could have huge out of pocket bills. Happiness becomes a day to day celebration of where you are and who you are with. Feeding tubes may be temporary or permanent. You could die before he does. We never really know.