Don't get me wrong: there are (must be) families that pull together to take care of elderly relatives. But judging from the reaction when one woman told her support group that she was enjoying the time spent with her declining mother and was willingly giving her life to her, this is a rare. The reactions of the other members of her support group ranged from derisive and resentful to flat-out hostile. The group either didn't believe her or thought she was just showing off. That's how hard it is.
In an effort not to discourage those who have taken on the job of caring for others, most books on caregiving tend to emphasize the positives of caring for a declining relative: e.g. quality time with loved ones and the feeling of doing something worthwhile. What they put only in the tenderest terms are some of the problems. Make that a lot of problems and many of them profound.
Having provided terminal care three times, and still recovering from the last one, I'm not about to sugar coat it. In the most recent instance, I found the caregiving so stressful that I wondered if I was going to die before he did, particularly when I wound up in the hospital with a suspected heart attack (just violent stress-related indigestion thank God).
Unsurprisingly, given the demands, most people are very reluctant to take it on. Within families, when some duck out and leave it to others, the result is a toxic brew of accusations, guilt-flinging, and ultimatums that can resurrect old childhood grievances (you were always the favorite), spawn suspicion (you only care about what's in the will), and predict unfavorable outcomes (just wait until it's your turn--karma's a bitch).
The usual suggestions that caregivers should take care of themselves and get time off are easy to say and, while comforting, very much harder to do. All I can do is offer my own suggestions to you as a sort of sympathy to tell you that you are not alone:
1. You'll do better if you to arrange for a day-care or an overnight facility when needed rather than hoping that anyone will offer (people can chip in on cost). Certain members of the family will show up only when convenient, and patients will be appreciative of these yetis because their appearance seems special. You will probably be taken for granted and even abused (if the patient is kicking, spitting, and biting, guess who is going to get it). The others may feel slightly guilty at escaping, but not enough to do anything about it and even when there is agreement, say, on taking the relative for a day or two, it always seems subject to revision.
2. Understand that giving recognition to you implies you're doing something exceptional and that may not be in the best interests of those ducking out in it. Everyone is going to claim that their lives are too busy for them to become involved. When they do show up, they will behave as if they should be awarded a medal. My friend L's sister-in-law ended spending her time with the father-in-law because when he came to her house, he insisted on using a copper washbasin as a urinal. Not nice, admittedly, but it left everything to fall on L. Yet, when he finally went into an assisted living facility, the sister-in-law showed up for the facility's caregiver appreciation days to have a free manicure. You'll need to speak out and make clear that some special recognition for the primary caregiver (flowers, gift certificate) is a good thing.
3. Non-caregiving relatives are going to be afraid that if they do one thing for you, it will be a slippery slope and you'll make a habit of it. You'll get better response if you give specific assignments and specific dates because they are finite. When D asked her brother to take their mother for a couple of days to allow her and her husband to get away, the brother suddenly had a business trip. When I asked for general relief from my partner's three children, no one responded. When my friend Kimi won a cruise and invited me to go for a week, I was smarter. I sent out specific dates and pointed out that this was one week out of three years with no break. Two of his three children showed up, although it was only my own son traveling for two hours each way for two weekends in a row who made it finally possible.
4. Be prepared to be tough when the time has come for professional care. Finances are often an issue when there is talk of placing the patient into a care facility. All of a sudden keeping the patient at home will suddenly become "essential." You need to suspect the motivation for this sudden sentimentality. The non-caregivers know how much these facilities cost and may want to save their inheritances. They will cover their guilt (assuming they have any) by criticizing you for not respecting the patient's wish to stay home. Don't be surprised if the relative who has been least involved shows up and wants to take over decision-making.
5. Don't assume that being a workhorse is going to be appreciated. If you try to point this out, your motivations will be misconstrued and peddled as fact (she didn't like the will). If you are not the first wife, your care-giving will be dismissed absolutely and any money left to you will in the minds of his children will be payment for whatever service you provided. If you doubt this, look at what happened to Robin Williams' wife who had to sue his children to keep things acquired in her marriage. You may very well not ever see the children again--but only you can decide if that's good or bad.
6. Finally, though, don't be afraid to reach out to others. It's sad when you have to watch someone you love slip away from you and go through personality changes. But the truth is that you have become somehow conflated in their minds with their loss of power and physical health. You are seeing them at their most vulnerable, and they have no one else to vent their frustrations on. I've been there. After I told my partner that I could not bring him home to die because I couldn't provide the intricate nursing care he was getting from Hospice, he turned away and never spoke to me again. Of all the things he had ever done, that was the cruelest. It was only through the kindness of the Hospice counselors that I was able to get beyond that final picture of him, not least because I learned that I was not alone. Others had experienced this rejection as well.
My thoughts are with you all and good luck.
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