Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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I'm so sorry. I know its very painful to see our parents as a shadow of their former selves. After my dad's stroke, I really struggled with his daily care but I thought I was doing right by him. But since his passing I see how unhappy he was. There was no more joy and it was so hard to accept this. Thinking of you. Sending you love and hugs.
I really think that only other caregivers understand what we go through.
So grateful to all of you for being here.
My day job (my paid career) is a fast-paced client-service role. Always "on." Always thinking 3 steps ahead. Always making things happen for other people.
Before caregiving, my free time was the opposite of that. (I made sure of it!). During caregiving, there were no days off from being the do-er, the fall guy and the rainmaker. And a crappy commute, whether I was working for "the man" or tending to mom.
Even when I wasn't physically with mom, my mind was on the job. Constant research. Working up solutions (and scripts) for the next bomb. And repeatedly explaining to the well-meaning(?) askers why I could only do so much for someone who refused to make me her FPOA and HCPOA.....yet only "trusted" me.
And looking like a turd because I didn't know what was physically wrong with mom and I couldn't define mom's cognitive defects. Because mom refused to see a doctor.
Most of the "Greek chorus" threw this back on me. As mom's only child, I heard endless iterations of "you just need to find the right words" or "you need to appeal to her sense of XXXXX" or "you need to force her."
Sigh. If they only knew. It wasn't worth trying to explain.
I think their Hippocratic Oath only extends as far as "do no harm" to their patient and doesn't include the caregiver. Because surely the doctors must know what many caregivers have to put up with.
When my mother's doctor told me that my mother needs "social support," I just looked at her. She said my mother needs "someone to check in with her daily to see what she needs." I said nothing. I will not contact my mother daily to see what list of slave demands she can come up with each day. My mother thinks all of her "wants" are "needs."
When I took my mother to the ER last spring, it was crowded. The staff told me to get a urine sample from my mother. The waiting room bathroom had flooded sewage in it. When I complained, I was told to take my mother to the the treatment room area.
What would have happened if I wasn't there?
We waited and waited to be seen in that ER. Of course my mother had to go the bathroom several more times. The waiting room bathroom still wasn't cleaned. ("Oh, it hasn't been cleaned?" the ER reception desk attendant said? As if she didn't believe me?)
When my mother was finally brought to a treatment room, she had to go to the bathroom again. Since by that time it was after midnight, I put my swollen foot (broken toe) up on a chair and told my mother that no, I wasn't going to go to the bathroom with her. I'm sure the staff wanted to me to take care of all that for them. I didn't. It was up to them.
I remember a man on this forum writing how he felt uncomfortable always having to help his mother undress in the waiting room of doctor's offices. It was assumed that he would do it.
So yes, the medical professionals often only look at us as servants to our parents.
You get instructions about caring for your parent with no regard to your capabilities or limitations. I am a distance caregiver in my 70s, but it still applies. I am expected to drive 5 hours there, stay in a hotel and drive 5 hours back to take clothing to the cleaners. Not the issue many of you have but I found that being at a distance and at my age was not taken into account. "See if you can get your mother to take her pills." Another 5 hour drive etc for a failed mission. It was around that time that mother was well into vascular dementia along with her Borderline Personality Disorder and making many, many crazy phone calls, demands and accusations which triggered my family caused PTSD and caused problems for the staff at her ALF. Finally I called her case worker and said that whatever I tried was not working and she was causing much stress to those who dealt with her. Finally the case worker said that caregiver stress was considered a factor and she would talk to her team. The outcome was that mother was, as she should have been earlier than this, admitted to a geriatric psychiatric hospital for evaluation and treatment. After she had been there a few months they told me she was very lucky to have me. I hate that statement - again it focuses one way only.
The never ending physical and emotional needs of my 95-year-old mom, seemingly without a break; the exhaustion.
The dysfunctional medical system with its constant roadblocks, mountains of paperwork and follow up phone calls to try to get normal things done.
The relatives who declare their deep love for my mom once a year on a holiday and then refuse to help in any way, or even stay in touch.
And the best thing is ANYONE who cares and acts that way competently. God bless them all.
Many in the medical field are now way younger than we are and they have not "walked the walk" of aging issues yet. As long as we can drive and be on our feet they think we are capable of doing anything required. Not so! Also, legally I do believe, if there is a family member present to discharge the elder to, they use the legal leeway to do it, regardless of what we say our responsibility/capability is. I talked to many persons at a hospital one day, begging them to keep my parent until she could at least get in a sitting position, to be able to get up, to move -- without 2 attendants helping. But, they took the papers to her behind my back and let her sign them to check out -- because I came to the hospital -- to check on progress, not to take her home. They should've sent her to a rehabilitation facility after her fall -- the physical and mental criteria all fit the blocks to check on their forms (thus getting them off the legal hook), but they didn't. I was physically there and "tag, I'm IT."
I personally think that the nation (per the census?) should provide a skilled care placement for anyone over 90 years old. The legal petitions in court should be to prove to allow the person to get to stay at home, not a battle for getting a skilled NH placement. "Certificates of Need" for nursing home beds is not being fulfilled quickly enough. There should not be a wait or a huge financial barrier to overcome. NO ONE should have to take on 24-hr care for an elder for more than a few months unless they absolutely have the physical/financial ability to do this. A nursing home placement is the humane thing to do and let the family visit and spend quality time instead of being sick and tired themselves.
The funding should be in place for this nationally. Ask your politicians to ask why there are not enough NH beds, why it is so long to get placement, and why do the medical folks get off the hook so fast when there is a family member "available" (are we really available??) to discharge the incapacitated elder to? Also, WHY can Social Services come after us just because we exist? And, for those of you who have family members who do not help, WHY do they get to defer responsibility???
I'm an "only" it's all on me. And, there is no financial reward in this, it's gone. It's a sense of responsibility to try and do the right thing that keeps me in the loop. But, I am a person too -- I have aches and pains, flooded basements, car problems, and much more to deal with. I, along with many of you cannot beg for respite and readily get it. Current laws are not in place for us. This needs to change now!
I'm curious about this "legal leeway." If you had simply said at that point that you were not able to provide the necessary care, what would have happened? How could they then legally discharge your mother into your care?
As far as non-helping family members, I'm with you on that. Sometimes I wonder how these "wonderful mothers" that people on this site take care of could have raised siblings who want nothing to do with their mother. One sibling that way? It could happen. But just how wonderful was that mother when all sibs but one want nothing to do with her care?
I was "suckered" by a passive-aggressive approach from the persons at the hospital. I've been "shamed" and "threatened" with neglect. That state has elder-responsibility laws.
If the person says they want to go, they are discharged. They have called a cab for her in the past when I couldn't be right there. I don't live in the same town. A few of the falls have been treatable enough, some for UTI or dehydration, but this occurrence I'd cited was a very bad fall. This has been going on for years. That facility had numerous records of her being there for unresolved/ongoing issues that they would not authorize the next better level of care. I mentioned this to the social worker, saying that "you know, she's just going to boomerang back here again soon." Her response, a shrug and "Maybe, maybe not."
Two of the best things I've learned from this site are:
1. Set boundaries early.
2. Be prepared that the hospital may expect family to take care of the elder upon discharge.
I can see my mother telling the hospital that she would be fine upon discharge. Showtiming exhibitions galore. She would be against a rehab facility (because my father died in one). I'm sure the hospital would just assume that the Daughter Slave (me!) would take my mother home and then she would be my responsibility.
I know to say that I am not able to provide care for her, and that they would be releasing her to an unsafe environment (buzzwords to use). They can try to guilt me all they want, with my mother chiming in. Who knows, maybe she would even pull one of her yelling fits.
And that is when I would just walk away, with perhaps a suggestion that the hospital could call my brothers.
I don't think more help will come any time soon. At least in the US, politics seem to be driving in the opposite direction, towards more "individual" responsibility and less government "interference." Very few people with any real influence will come out and say that this just doesn't work, that it's unsustainable. That "children" in their 60's and 70's can not take care of parents in their 80's and 90's, nor should they be expected to. Because there is no plan B, and no plan to even consider a plan B. Meanwhile our parents just get older and feebler, and our last best years are spent running them around to doctors and taking care of their daily needs. It stinks, but I don't see any change on the horizon.
I think the primary difficulty is perhaps that the alternative to people living long past their natural shelf life is... their not living so long. It's not an easy sell to an aging electorate, is it?
So assuming that the issue as a 75th birthday present of ice floes, tickets to Switzerland or whatever means becomes fashionable for our generation doesn't really take off as government policy, we're left with the same questions - only now harder to answer.
How much?
Who's paying?
Where will we find the workforce?
You're right, it is unsustainable, and you only have to add up to see that. So what is the well-managed, humane and ethical alternative?
Someone around 24/7 or when we do get alone time it lasts for 5 minutes. Loss of privacy is number 1 with me.
There's also the flip side, which is frontline healthcare workers who make hardly any money and get the worst jobs around.
So many resources are wasted on people who would have died a long time ago were it not for the marvels of modern medicine. And so many resources are withheld from people who just need a little bit of help to keep themselves sane and their heads above water. It makes me weary just thinking about it about what a mess we are in and how much worse it will get.
I have really become disillusioned with the US. It seems like a few people want all the resources and look upon the ordinary people as parasites. The ordinary people pay proportionately more taxes, but then are told they need to stand alone and not depend on anything from the government. And people have come to accept this.