Everyone's struggles are increasing. As their partners decline, the horrendous reality of the diagnosis received 2 or 3+ years ago is becoming more apparent. So much is hard, but manageable for a few years. But it changes. And if the caregiver would just resign themselves to the fact - give up your life, give up your job, your exercise regime, your hobbies....you can manage. If you just dedicate 24 hours a day to your partner, you might be able to manage a little longer. But how to do that and not hate them? Not resent every yoga or spinning class missed, every social engagment cut short, every time you walk in the door anxious to see if is "ok" or 'NOT"? The need to manage EVERY minute or you just won't get everything done. And the point comes when they can NEVER be left alone. Its all emotion now, no rational thought. The most basic things that should make sense, they are just common sense! They don't any more. And crying about it, screaming about, cursing the gods just won't help. No choice except a deep breath, a reach for that calm, sweet voice, assuring, asking, pleading.
OK - not an exact synopsis, but that is what I felt listening to everyone's struggles at the meeting. Everyone tries to offer suggestions/options but as everyone's situation is a little different, we feel quite helpless. But at least we are in the room together, and that helps.
Other discussion - use and anti-depressants and ativan. Everyone's experience with having their partners on some kind of anti-depressant was positive. Family members sometimes worry about them, but all caregivers at the meeting reported that anti-depressants helped. Worth serious discussion with the physician. Ativan: some reported an after effect that made people too drowsy/unresponsive. On the other hand, if emotion has skyrocketed out of control you have to make choices. A number of people reported that Ativan at bedtime helped their partners to get to sleep.
Discussion about the contracted workers through home care: ok, yes they will stay with your partner. But other than a body in the house, they are often useless! They can't drive anywhere, (OMG the RISK) They "aren't allowed" to turn on the stove, so can only reheat in the microwave. Don't know (or have any interest in learning something like cribbage which is one thing a partner does enjoy. Really, they get paid to sit on the couch and watch TV or be on their phones. No laundry, no dishes, no sweeping the floor. One caregiver did report that she has much better help - but it did take a lot of work to get people in place who will actually walk with her partner to Mcdonalds for coffee, or actually take a city bus somewhere with them. So it can be done.
Books recommended: A Curious Kind of Widow by Add Davidson and On Pluto by Greg Obrien.
Next meeting Tues June 16, then one meeting in July (21) and one in Aug (25).
Discussion of some summertime get togethers - potluck picnics. Please watch your emails!