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! 💕
They are truly exposing themselves and are showing their true selves, I'm experiencing the same problem and it's just not worth the effort to even respond, I chose to just ignore them
Only you know what you're capable of, I think you're doing a great job, keep up the good work 😍
its in their name (our name) and we mean no harm. “Care”. Care for yourself before burnout or something worse. You’ve read these horror stories here and how we all reach out to help. In a nutshell that’s it.
Enjoy it it while you can & god bless!!!
-non-. UGG. Sorry. I thought your talking about other caregivers trying to give you advice that were driving you batty. Goodness I have to be more awake reading!
my peev about non-caregivers, and caregivers who are not caring (i’m not talking about burnout, I’m talking about those who are in it for the money) is the assumption of how little our loved ones are still present just because they’re old or even when they have dementia. They’re not always “gone” and what is left i see that they’re truly trying to hang on. I love that poem About the crabby old woman where she wants you to still see her. That is just so true. Breaks my heart. God bless you for loving your mother so much. There needs to be more people like you.
The heart of a caregiver is a rare element on earth
They define the true meaning and value of God’s worth
The soul of a caregiver is precious and pure
Their spirits are heavenly, of that I am sure
The selfless compassion and love that they share
Provides relief, joy, and comfort just knowing they’re there
Their efforts often unnoticed, full of strength and emotion
Bring peace to the heavens with angelic devotion
Many nights they are restless, their minds filled with unease
Because they devote their lives to tend to others’ needs
There is none more deserving than one with the caregiver ability
They show peace, love, and mercy and give our loved ones dignity
Caregiver, a special place in heaven is waiting for you
There is a special place inside my heart that is reserved for you, too
Thank you for everything, all of it, and more
I pray someone so kind is there for you when you knock on God’s door
~You are loved and respected and cherished
And I wouldn’t have known what to do without you
In memory of Earl T. Huff, Sr. & Dedicated to: The Isadora, Spring Hill, FL
poetry poem Careverse
by Ryann Huff
I am thinking that "those people" who are criticizing your caregiving are exatly those who have disposed of their parents into Nursing homes and the like, long before trying every alternative option to keep them at home and they are either jealous of you abilities, or are feeling guilty that they didn't do as great a job as you are doing, plus your love and devotion to your parents may be something that they recognize that they are lacking, but then again, everyone's caregiving situation is different.
As others have mentioned, a few quick "comebacks" like "it is working quite well for the both of us right now", and "as long as my Mom is healthy and happy, and I can comfortably care for her with my great support system that I have in place, then I will continue to do so", snd "it works for us", then I should carry on and not give their snide comments any merit. It really is none of their business.
Fantastic job btw! You should teach courses on keeping seniors at home longer!
Just accept people where they are. Shoe support instead of always insisting that they need to place a parent in a facility. Or trying to make them feel like they are an oddball if they don’t.
I can cope with the peanut gallery, particularly after I began to expect what was coming. What stirs my anger several times every day is the impact it has had on my mother. Mom asks me to sit down a minute because she wants to talk with me, usually as I'm picking up the dishes after sharing a meal or tucking her in for a nap or bed. Then she says something like "they think I should move out" or "I want to stay here". I tell her I'm glad she wants to stay because I really want her to stay too and she seems relieved but because of her short term memory problems we repeat this conversation again. I finally wrote her a note she can re-read and that seems to have helped. I wasn't sure I should write a note at first because I was afraid it would keep reminding her of a conversation I wish she would forget. Now every time we start getting her ready for day care, she asks if I am coming too and then wants absolute conformation she is coming back.
I hate seeing her anxiety over this nonsense! I think her limited mobility and greater dependence combined with my father's death and hearing some of the peanut gallery's comments is driving her unease and I cannot seem to reassure her enough. She has a doctor's appointment next week and I'm thinking of asking if there's some mild anti-anxiety medication that could help for a few weeks.
Why is it that people who have never been doing what is being done have so much to say on how to properly do it???? (I sound like Dr. Seuss)
People need to just take care of their own lives, rather then think they can give advice to others.
Hey, that's an idea. Why don't you give them some advice about their family/finances/education/work decisions IMMEDIATELY when they say a comment to you? Maybe that response will give them a taste of their own medicine and shut them up with a SMILE on their face;)
Is there any way to nip this in the bud, so to speak? To keep it from happening? Do people drop in without warning, or do you know they are coming to visit; do they call first? If the latter, maybe when they call you could clue them in that certain topics are off limits brcause they uset your mom.
I had to do this with certain visitors to my ALZ lady. There was one gal who would come over and just bring up complaints and miseries and sad stories that would upset Miss E to no end, and to no good purpose. I told her if she did it again she would have to leave. She forgot once and I stood up and said, "Thanks for visiting, it was nice to see you, come again," and showed her out. Worked like a charm.
I agree with cluing people in before a visit. You might tell them or write them a note or text beforehand with something along the lines of, "Mom is doing well, and is glad she is still here with me, but I've had some people who visited recently asking if I'm moving her to a facility, which I'm not. They've said this in front of mom, which is very upsetting. I'm asking visitors to please not mention anything like that that might upset her, and I thank you in advance for understanding."
Hugs to you, and I'm very sorry for the loss of your dad as well. Prayers for you and your mom.
This week i took her to her neurologist and because of recent falls and the beginning of her wandering he recommended NC or 8 hrs a day of in home care other than myself . On and off for the past 5 years I've had people come in for shorter periods of time as long as 4 hrs a day for as many as 4 days a week .
We had made out are wills several years ago and made our eldest daughter executor and poa for both of us. In August of 2016 my wife had to go into rehabilitation for a short period to regain strength after an illness, needless to say she placed her in a MC facility. Totally by surprise instead of bringing her home ,totally decided by her and her sibling. She stayed a month as it was her wish to be home and at that point I thought it would give additional time to recover.
In the state of Michigan there are alternate ways to get some outside help like the county you live in at reduced rates , they do daycare , companion aid, lite house keeping, help with meal planning and preparation and a long list of other amenities. All that is determined according to the needs, charges are then rated according to your means . It's not charity it comes from our taxes , rates start at about $2.00 per hour to $23.00. They also furnish meals on wheels on a donation schedule all the way to $0 if so needed.
The biggest hardship an elder experiences is lonelyness and with growing older most find they outlive their friends so along with a longstanding illness the lonelyness becomes greater.
We live in a society today where the younger generations have much more busy lives and even with the best bringing up they have become preoccupied with their gadgets and it's hard to find time in their busy lives to share their time with an elder.
Which brings us back to the topic of discussion.
It takes a special person to dedicate their time and compassion to caring for a loved one and till someone has walked in your shoes they need to just shut the h--l up, my daughters chose put their mother in a home rather than even listen to her on the phone and now they have her blocked.
Please keep doing what your doing as I know how hard it is but your reward will not be in this world but in eternity, I'm sure your mother would have done the same for you with her last breath😍😍
This situation is between you, your mom and her doctors. Don’t allow anyone else's ignorance about a situation determine how you feel. Don’t allow yourself to be insulted by them. Sure, situations can become unnerving but trust your instincts, asks for help when you need it. Only take advice from those you trust, the rest throw by the wayside. You sound like you’re doing a great job caring for your mom. Take care, hugs!
In the end, the decisions are hers and should be respected.