Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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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!
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.
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.
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.
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 really think that only other caregivers understand what we go through.
So grateful to all of you for being here.
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 figure everybody has problems but nobody's problem is less important and I'm really getting sick and tired if people who think otherwise. I don't understand why people have practically have to have a debate on why their stress or problems are more important than someone else's.
In my opinion, it's a lack of empathy for each other.
I am the youngest of five siblings. The sibling closest to me in age is 17 years older...they've all raised their children, and my kids' childhoods have been taken over by their ill grandmother.
Thinking on it makes my heart hurt as well.
I will have to return later.
But I thank you for asking it.
She is living independently. At the moment the auditory problems are mainly repetitive music but also some words and phrases being repeated, like her house number - thankfully nothing sinister.
CTTN55 - she can afford to pay for help if she needs it and that's something I'll need to look into. Her bathroom is right next to the front door so I admit I clean because I'm embarrassed if anyone comes to the door and also I need to clean it if I have to use it - although I avoid that as much as possible.
I will not do personal care for my mother. She doesn't need it yet. I will also not do any housecleaning for her. She has money and has to decide when she's ready to hire a housecleaner. I will not become her personal slave.
Does your mother have money to hire help?
My Mum is 92 and lives 10 minutes drive from me.
She has done really well so far, but is now having auditory hallucinations (no UTI). She phones and asks me to listen, I can hear nothing but she gets angry with me when I say I can't hear anything. She blames her neighbour and says she will go next door to complain. Nothing her geriatric doctor, nurse or I say, can convince her the noises are her ears playing tricks.
I take her shopping twice a week and each time I ask if she wants to come along, she says, 'I was afraid to ask'.
She has started to forget a lot and shows me old family photos, saying she doesn't know the people in them and they must have been left by the people who lived in her house before her - 40 years ago! She also mistakes my daughter for my cousin, who is 35 years older. My daughter is expecting in June and I really want Mum to understand this is her first great grandson and not a new cousin of mine.
Finally, for now, the stories that she repeats over and over, as if I haven't heard them before. How do I continue to appear interested when I can repeat them word for word?
Oh, ok, one more thing, I am really dreading the time when she needs personal care as I really feel I won't be able to cope with that. As it is, I struggle to clean her toilet as she has accidents and doesn't seem to notice the mess she leaves behind.
I feel bad criticising her but I am starting to feel emotionally drained. I'm an only child so no siblings to help out.