Come September I broke the news to Clara about the cruise. Then I came up with the idea of having Clara arrange for her own care. Rather than me getting the phone call at the last minute for the arrangements I made, I thought let Clara take care of making arrangements with her own daughters. I had a hard time not getting involved. Clara mentioned to me she told her one daughter about the cruise. She related her reply was that is a busy time for her and she wouldn’t be available for anything extra. I would remind Clara to be sure to make her own arrangements. We were taking my mother along on the cruise as a thank you for all the luncheons she arranged each week for Clara, so Clara knew she wasn’t available to help care for her. Andy would ask me about the arrangements and I told him it was up to his mother and the more I asked, the more it involved me. He said his worry was we would have a problem days before the cruise and he didn’t want that stress before leaving on our first cruise. About three weeks before the cruise, I started pressing Clara regarding what her arrangements were. She was trying to involve anyone but her own daughters. When I asked her why, she said they were not available. I was not sure if it was their words or Clara not wanting to ask them. That would puzzle me how it could be so easy for her to ask her daughter-in-law to wipe her butt but not ask her own daughter for help in her care. Zack was going to be home the week of the cruise, but he said he would be cramming; studying for finals. He said he could care for the dog, but didn’t want the responsibility of caring for his grandmother this time. Since he tends to study late into the night, he said he didn’t want to be in the middle of studying, to have to stop to put his grandmother to bed. On one hand that seemed ridiculous, but on the other hand I thought we should be able to go away for a week and not have to be the only family members involved with Clara’s care. Zack was not a stranger to helping with Clara. The times when Clara would not be able to get up by herself and Zack was home, he would stop what he was doing to assist. Once when Andy met us at the car to help his mother in the house after dialysis, she demanded Zack help her. Andy is quite strong and was more than capable. Once Clara made up her mind there was no changing it. To me it was actually quite funny. Neither Andy nor Zack found the humor in it. Zack was in the middle of completing an assignment for college, and while he was accommodating to his grandmother, it was enough to break his concentration. I decided not to argue with him about his decision.
I was Clara’s full time caregiver for 8 years. I mentioned earlier in this blog that I am posting exerpts from my book, Life with Clara – One Caregiver’s Journey. My goal has always been that my experience and honesty could help others in this life changing role. My entire account is available at www.createspace.com/3469034
I’m so thankful that when I needed to go out of town, I could easily make respite care arrangements for Bill at the nursing home and that Medicaid covered that. If I had a dollar for every time I had to stop whatever I was doing to take care of Bill, I would have been rich beyond my wildest imaginings so had I been in your shoes, I would have insisted Zach care for his grandmother in the two weeks you were to be gone. In the six years I cared for my husband, I managed to publish two books so I think Zach could have handled his studies and taking care of his grandmother for two weeks.
I remember reading later on in your book that Clara eventually persuaded one of her daughters to come and put her to bed at eleven at night, but the daughter was angry about that, and I don’t blame her. Why should she have had to come to your house late at night to put her mother to bed when Zach was right there. Just because you didn’t have a career or weren’t in college was no reason why you should have had to shoulder all the responsibility. Please forgive me for getting on my soap box, but it makes me so mad that some people can be so selfish. There, I’ve done my venting for the day.
Dear Abbie,
You crack me up. It seems to be the perpetual complaint many caregivers have, the main or often the sole caregiver seems to be looked at as the one responsible. The others feel they are helping you, rather than view it as their contribution to their loved one. Clara’s daughter lived about a mile from us, and Clara should have gone to her house while we were gone, but refused. You are right, Zach could have handled it, and probably should have. It was more about his own going resentment that our lives were always expected to revolve around his grandmother, and from his perspective other family members were not willing to make that sacrifice. Still didn’t make my life easier. Michele
I just wanted you to know I have been reading your posts and have laughed, cried, and commiserated, knowing how similar my situation is with family. In my case, I was only able to keep my mother living at home and move in with her after paying my own lawyer to get involved, since my siblings just wanted to put her in a nursing home – against my mother’s and my wishes and the doctors’ ok (and my mother’s lawyer was weak and tried to side with my siblings at first since there are two of them, and she put her own mother in a nursing home so she sided with them out of guilt I think). Anyway, my sibling who lives closest doesn’t help, out of spite and self-righteousness, even though my mother needs 24-hours care (fortunately insurance pays for at least 32 hours of homehealth or adult day services as well as some respite care) and just periodically visits socially or takes her on an outing.. The other sibling is mean and tries to be controlling, even though they handle the finances which is a big help. There is much more to the story, but i thought I would start with that.
p.s. my name is not really Fannie Lou. I want to stay anonymous for now and I admire the civil rights activitist Fannie Lou Hamer so my nickname is a tribute to her.
when I said 32 hours I meant 32 hours/week
Dear Fannie Lou, You are EXACTLY the reason I wrote my book and put excerpts each week on my blog. I felt like there were so many things that I was feeling that were not understood. My motive was never to discredit my sisters-in law, but to share the ongoing frustration when you are made to feel like it is your ‘job’ rather than the act of selfless love it really is!! I’m glad you are at least getting some help each week so you do not completely burn out. Thank you very much for letting me know you are an ongoing reader, I wonder some times if anyone other than Abbie is reading. Take care, Michele
Thanks for the encouraging words! Another problem I have is that despite the help, I am still feeling burnt out and unmotivated, mostly because my health is not great either. And I haven’t been able to find a support group (and two caregivers who lived near me recently moved away). And also I have anxiety about life decisions coming up, so I feel stuck and am eating too much and other distractions to take my mind off of everything. I need to find a counselor who understands my situation, but I have gone through 3 lately who didn’t really understand or even judged me for taking this on. People just can’t take themselves out of their own mindset and put themselves in a caregiver’s shoes sometimes. Because the bottom line in my situation is I love taking care of my mother and for the time being I don’t WANT to do something different. It wasn’t a decision made out of guilt or mindless sense of obligation, as so many seem to assume. The other people who seem to understand are the few other caregivers like myself I come across or people from other countries who have different values about taking care of one’s elders. i think it is especially hard for people to understand because I am under 40. They think I am “putting my life on hold” or even “throwing it away” for this….I think about writing my own blog to communicate the frustrations and also the joy, but then I think I couldn’t do it honestly without staying anonymous, but then the people who need to read it (my siblings, my mother’s friends and church people) wouldn’t know it’s out there!
Dear ‘Fannie Lou’, I’m sure there are many caregivers that can relate to the many feelings you are encountering. Since your local caregiver support system moved away, doing something online could be a great resource for you. I agree you should not use your real name, because while your Mom is living, it is not fair to her to share personal things. At least that is how I felt with my mother-in-law, and waited to write my book. With regards to your having problems finding a counselor that seems to ‘get you’, have you tried looking up your local Department of Aging? They have numerous resources for caregiver’s, and although there is a waiting list for physical help, they may be able to direct you to a counselor that is familiar with the plight of the caregiver. Just a word of caution, be willing to listen to all things said, even if we do not agree at the time, it doesn’t mean there is no value. A very dear, wise friend once said to me that when we receive counsel, usually we get more than we need or applies. Often there is something that can be helpful, but we tend to focus on the part that does not really apply and totally dismiss the part that does. I hope that comes across correctly. I also found you can not be completely honest about your feelings with someone that has never been a caregiver because they judge you based on their own limited experience. You have to spend more time explaining all the dynamics of a caregiver and it leaves you more exhausted. The fact that you are getting burned out is understandable with your role. I often wondered if I would need a caregiver once I fulfilled my role as one because of the physical impact. You are not going to change the minds of your siblings, your Mom’s friends, and church people. They may be well meaning, they may be clueless, they may feel guilty, who knows? Maybe they see you deteriorating and are genuinely concerned for you, although it doesn’t come across that way. You will expend energy you cannot afford to waste trying to ‘bring them around.’ I understand your feelings, and often had conversations in my head as to what I really wanted to say to my sister’s-in-law. I felt that everyone had the ability to take care of an aging parent, surely if a daughter-in-law could do it, her own two daughter’s could!!! In time, I came to believe not everyone can do it. Of course, it seems like the ones that do the least have the strongest opinions as to what should be done! Stop hoping to bring them around, it is not going to happen. Even though your health is not great, if possible, try walking, at first around your block, then when that becomes easy, two blocks, constantly increasing as you can. It may seem like such a small thing to do but it will be good for your own body. Come up with a mental plan, when you start to feel overwhelmed, that is a signal for you to walk, even if only around your house because you cannot leave. Holding on to anger towards other family members will only continue to drain you. I speak from experience, and as the saying goes, ‘hind sight is 20/20.’ I hope you can benefit now from what it took me many years to figure out! Michele