Major Vent: Why do non care givers always seem to think they know best?
My father who had been living in MC died a couple of weeks ago. Now most everyone is telling/expecting me to place Mom in AL since "now you don't have to worry about the money running out".
Before a fall in Sep 2018, Mom with MCI and almost no short term memory, lived with me and completed all her ADLs except for washing her hair (arthritis in shoulders is too bad now for her to lift her arms much higher than her ears) and could stay alone for several hours with the monitoring support I have in my house. Immediately after the fall, Mom was basically bed bound and needed a lot of help. She has been recovering from the fall and is doing well with a walker in the house but has not regained her confidence. She wants me to watch her while she walks through the house or to the bathroom. She also suffered additional cognitive decline following the fall so I do not leave her alone anymore except for very brief drop-off/pick-up trips maybe once a week or so. She is much more dependent on me as her "security blanket".
Doctor and PT expects she will fully recover walking ability. No one knows whether cognitive will improve as she physically improves or not. I'm hoping she will but planning as though she will not. I have arranged adult day care 3 days a week (6 hours a day), in home PT 2 days a week, and in home respite care 6-12 hours a weekend so I can attend the grandkid's sporting events and other local events I enjoy. I have an aunt (Mom's younger sister) who is my emergency backup care giver and a brother who is willing to sit with her after work if I need to be elsewhere. Although I am responsible for arranging 24/7 coverage, I am not stuck at home 24/7 and get at least a small break almost every day. My aunt and her daughter (my cousin the registered nurse) are going to take Mom for 10 days this summer so I can enjoy a vacation with the grandkids.
Although Mom certainly qualifies for AL or maybe MC, she is still doing well at my home and prefers to be here where she sees the family coming and going (kids and grandkids visit 1-2 times a week and at least 1-2 great-grandkids visit daily). In fact Mom doesn't care for day care all that much, often telling me she would rather just stay home.
Mom is 87 with a couple of long standing chronic conditions (spinal stenosis, thyroid, pernicious anemia) but no major health problems, so she could easily live another 10-12 years. My grandmother lived more than 4 years after a fall at 81 that rendered her bed bound and she was suffering CHF at the time of the fall. Mom's overall health today is much better than my grandmother's was at 75. The in home care support costs about 30% of AL/MC and even if those costs increase significantly the money should outlast her life expectancy with enough for a good facility the last 2-3 years. Having enough money is important but it's not everything - Mom's quality of care and happiness are important too. I believe I provide a better quality of care than she would experience in AL/MC. Most of her friends have already died and with her short term memory problems she cannot really make new friends that well. The folks at day care like and remember her, but she doesn't remember them very well.
Since she is happy here and I do not feel I am sacrificing my life to provide her care I see no reason to push her into AL. I promised Mom she could live with me as long as we could make it work but have always stated that when she needed true nursing care she would need to move to a facility where I would make sure she has good care (my bad back won't take some care giving tasks for very long). I placed Dad in MC when I believed that was in his best interests and I will place Mom if I need to - but I just don't think we are there yet. Why is everyone (who have never engaged in her care) think I should? My aunt and my brother (who do help with her care) think she is doing well with me too.
If only the peanut gallery would leave me alone!
Actually I thought you were going to give us a punchline, up there! :)
Is the real question: can I have 101 ways to tell these people what to do with their unsolicited advice?
I wonder if they wrongly think you are burned-out or overwhelmed with caregiving and think this is an opportunity to get some relief? You have explained to us in detail what a wonderful support system you have set up to keep your mother at home and get respite for you. If you really cared about these people giving you uncalled for advice, you perhaps could print out what you just wrote and give it to them. Otherwise, no reply is warranted as it is not their business. I pray that your mother heals well from her fall, and that she continues to thrive under your care.
As for those people who, possibly with the best of intentions, try to tell you how to run your lives, you also seem to be handling them just fine as well. You can tell them anything from, "Thank you, we're doing just fine, " to, "That's really none of your bloody business," depending on whether they really mean to be helpful and supportive or actually become invasive and insensitive.
Sometimes people with the best of intentions can be the hardest to deal with. I think they think their concern gives them special privileges to push the boundaries of propriety. Like CMouse said above, you need 101 ready answers for when they take you by surprise. Maybe write some down and practice saying them (even the outrageous ones!) to give yourself permission to use them when the need arises.
Meanwhile, blessings to you and your Mom. How fortunate you are to have one another! 💕
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