This may have already been discussed in various questions in the forum, but I really don't have a space to share my thoughts or feelings about the challenges of being the primary caregiver for my mother. My mother, 77, began to physically and cognitively decline about three years ago. Already diagnosed with diabetes, cirrhosis of the liver (fatty liver disease), a stomach ulcer, and anemia, she developed a UTI infection. She went through a state of delirium for almost a month. When she was released from rehab, she contracted the flu and developed shingles. She was hospitalized several times over a period of several months. She hasn't been the same since. After her hospitalizations, she was later diagnosed with congestive heart failure and macular degeneration. As a result of the chronic conditions and prior mental health challenges, she does have cognitive impairment. She has good days and bad days. Since my sister lives 15 to 16 hours away from my mother with me living only one hour away from my mother, I took on the task of being the primary caregiver. Needless to say, it has been a very hard, lonely road. Knowing that many individuals have their own challenges in life, I have avoided dumping my own frustrations and challenges of caregiving upon individuals. However, there are times, especially when the challenges feel extremely overwhelming, that I have confided in certain individuals. While some individuals have been supportive, most make remarks such as "at least your mother is still alive," "you should feel grateful that she's still alive," "I wish my mother could still call me." When I hear such comments, I try to empathize with these individuals. I know that many people miss their loved ones. I also know that what they're saying is coming from a good place. However, their remarks do come with a tone of condemnation, that I should feel ashamed or guilty for voicing frustrations related to caregiving. I love my mother very much. She is my hero. I have made very real sacrifices to make my mother happy and comfortable. It has been painful to witness her decline. Even though it has been painful, I'm always there, supporting her 100%. I know that most of that support is invisible to many people. Just recently, my mother called me 21 times within a span of 24 hours regarding a small change with her diabetic meter and lancet. I picked up the phone every time she called. She had several meltdowns. She gets hung up on things now, fixating and ruminating. Her confusion certainly doesn't help. While trying to ease her anxiety, worry, and fear, I was working, teaching to be more precise. It's the last week before spring break, which means everything is much more challenging. Again, when I expressed how tired I was, a friend stated, "what I would give for my mother to be back alive and call me 21 times." All I said was that I was tired. As caregivers, what do we do when people can't or won't empathize or acknowledge our challenges? What do we do when people attempt to silence us by shutting down the conversation or reminding us of our 'place'? How do we express our own anxieties, fears, frustrations, concerns if we can't share them in the places/spaces we most frequent? How do we even navigate everyday conversations with coworkers, colleagues, friends, or family members? Are we just supposed to put our nose down, shut up, avoid our own physical and emotional challenges, and continuously guilt-trip ourselves for our 'ungratefulness'? I know that these questions are quite open with no clear or defining answers. I just really wonder how I'm going to be able to do all of this if I'm going to be silenced even when I just say that "I'm tired."
I would try to express your fatigue and frustrations to a better group of friends. You might also try finding a counselor to talk to. Watching your parent decline and suffer is an incredibly painful thing to do. We do what we can, but at the end of the day, we are helpless to stop the decline. That's a terrible feeling.
People who say "I wish I had my mom to talk to" are talking about their mom in her prime. Their healthy mom with her full faculties. No one would want to go back and talk to the mom that was scared, saying "take me home" or "I'm in pain."
Those are thoughtless responses to your statements of fatigue and frustration. They are completely dismissing your feelings. I would point that out to the next person who does it.
The Alzheimer's association lists caregiver support meetings for all over the country. My mom used to call six times in half an hour, even in the middle of the night. It is frustrating and exhausting! Stop answering her incessant calls. Once or twice a day is sufficient. Maybe she is developing dementia and starts obsessing about something and doesn't remember she just called you?
Boundaries will help you to cope. Sure that is hard, but with time you will adjust, mom maybe not so much. Has she been screened for memory loss?
Someone who can't empathize with YOUR feelings and instead tells you about THEIR feelings is pretty narcissistic.
For sure, you will find empathy here. Vent away! (((((Hugs)))))))
People often mean well - but have no idea what they're talking about.
I have lost "friends" since becoming a caregiver, because the stresses and demands have changed my life - and me. Most stresses in life are secondary and, or limited and will get better over time. Caregiving, especially for the demented or otherwise challenged loved one, becomes increasingly more difficult as the disease/illness progresses. You have to find outlets to give yourself relief. If not, the resentment builds. And when so called "friends" make seemingly unsensitive remarks, you feel like unloading on them. Don't. It won't make a difference. It'll make you look bad.
Find a support group in your area. If you can't, reach out for just one good friend who genuinely cares and share with her. For me, the only place where I find total acceptance and understanding - is this support group. They have kept me above water, many times.
You have a LOAD on you Rhetorica. Don't give up. Reach out for help. Check with family physicians, senior centers and any place you can think of for support. You are wise to share with us. We care. We understand. ((Hugs))
My mother had me when she was 40 years old. She was a a single parent. Although it's not entirely uncommon for people in their 30s to caregive to a LO or parent, it's not entirely common either. Or, at least, it's not entirely common in my current location, in the Southern United States. I'm also LGBTQ. I've been with my partner for 15 years. She has also taken on the task of being a primary caregiving to my mother. While there is definitely a growing acceptance of LGBTQ individuals across the nation, many communities in the South are quite traditional.
Being an LGBTQ caregiver has presented its own unique challenges in caregiving. Again, that's another story, one to be told later.
Unless I go to a support group, I'm never going to know. I need to just go and see what happens.
Just realize there are those who get it and those who don't. This is a totally different disease than most and it comes with an entirely different set of challenges.
People are flawed. Very, very flawed. It's best to not have expectations of them. When we have an unmet expectation, this is where anger comes from. I also agree with the comments about shopping around for more empathetic friends.
Even the best empathizer can't fully know what it's like to got through what you are and to feel what you feel. My cousin's 7 yr old daughter was murdered. I am very close to my cousin and this tragedy happened in the early 80's. I am positive that no matter how hard I try there is no way I can fully empathize with her. I know my cousin has had to ignore or forgive well-meaning things I've said to her over the years. I'm so grateful she did. Also it's like when people who have dogs but no kids think that is what it feels like to have a child (I've come across this one many times). Nope, not even close. There's no possible way for them to know. So, being emotionally flexible and forgiving is probably a fruitful strategy.
Finally, I myself have had to work on creating peace in my heart that for some things in life there are just no perfect -- or even good -- solutions. This has been the hardest thing for me since I'm a task-oriented problem-solving person naturally. "Letting things go" just about kills me. But hanging on to things I can't change will kill me in other ways. May you gain peace in your heart over all of your concerns and I pray you find a wonderful confidante or resource where you will be fully heard and understood!
the effect of that was an apology and acknowledgment that the whole situation was beyond her imagining. But, at least I didn’t hear any more crap
Now I am going to get to you.
You are an hour away from your mom. Your mom will not be able to continue to live by herself if her cognitive abilities continue to decline. Have you thought about what your next step is going to be? She is in Assisted Living now will she transition to Memory Care? Can some of the calls she makes to you be handled by the staff in her AL community? Is there an easy way for her to contact them? If you can gently start having her reach out to the staff more often that will give you a bit of a break. Maybe even let your phone go to voicemail between 9:00 pm and 7:00 am. If there is an emergency the staff of the AL facility can call you. Your voicemail to your mom can be a calming one instructing her to call the staff.
In order to be a good caregiver we have to be good to ourselves and as selfish as that sounds you need to set boundaries.
You need to carve out time for you.
And many people don't understand. And until they are in the same situation they may not "get it". But if it is friends you still want to get together with if you carve out a Thursday for "your day" you can get together on Thursday, invite people over, have dinner and relax. Sure sounds easy right...it isn't because you are going to feel "guilty" not answering the phone between 9 and 7, your going to feel "guilty" on your Thursday "off". Well guilt is self generated no one can make you feel guilty but yourself. (did your mom feel guilty when she left you with a babysitter when you were little? I bet she did the first, second time but after that when she realize you were just fine for a few hours she got to relax. So do the same.
As for your immediate question, not even being able to say "I'm tired"...that's not a friend at heart. I'd avoid them. Take care of you and then find some others. And beware the support groups...they can be great...but there too you might find if not for adult children you'll be surrounded by spouses and feel like an ungrateful child/bad child dare you complain. At least in some.
And you have to lay down some rules with that phone. Your battery is dying isn't it? Oops, no charge. Faulty phone...anything.
Just remember, you're not alone. You're surrounded by people dealing with the same thing and just don't know it. Yet:-) Sending Hugs.
They could be blinded by grief and can’t imagine why you are stressed when mom calls you 21 times a day. It could be that having never been in our boat, they just don’t get it. Like I said in a recent post, “If these “friends” were suddenly put in your position, they would jump back as though someone punched them in the face with the brass knuckles of reality and then apologize profusely for not understanding the hell you’ve been put through.
You also wrote: Being an LGBTQ caregiver has presented its own unique challenges in caregiving. Yes it does, even in 2020.
Caregivers here come from different backgrounds and different walks of life. Every caregivers situation is unique, but we can all relate to turmoil when dementia or physical disability robs our LO of independence and us of our freedom. Vent away. 🤗
Is there just one main culprit? If that is a person whose support you were counting on, and would have valued, then it must hurt. It's a shame, but she's - she? - showing her true colours. Demote her. Find better friends. Like us! :)
May I also suggest that you don't answer your phone 21 times on the trot? If there is an issue such as that one, and you know you're not going to be able to solve it over the phone, tell your mother that she is not to worry, you will sort it out this evening/on Wednesday/whenever, but that you have classes now and have to turn off your phone. She may not retain what you've said to her; but her ringing and getting your voicemail will do her no lasting harm even so. If she's going to ruminate and obsess she can do that just as well without your assistance.
Find a caregiver support group besides this forum and confide in those who have shown understanding and support.
Goodluck to you .
have you thought about having your mom live in assisted living? She would get help with her meds and not be alone and this would help you. She would not be calling you so much and you could even turn off the phone and know she is where she can be helped and watched. That would be helpful to you both. Especially since you still work.
Tell them you think it might help them to visit your mom and your mom would love having them visit her.
The Mother was a sweet lady and was being bullied. Before I left my table to exit the restaurant I went to that table and told the daughter that now is the time to have empathy, and show love to your mother. One day she will be gone, and when you look back at how you spoke to her will you feel proud, or will this petty stuff your
ragging on her about now really have been all that important?
Some could say I was out of line, but had recently lost both my folks
and I really felt a need to say something to that daughter.
Your post just reminded me of that day back in 2005.
I care for my guy who has had major health issues since 2016. With many months in the hospital and then a stay at a rehab. Wheel chair, renal failure, mass muscle loss, nerve damage. Last year was dealing with mental issues a lot, which for me was the worst of the care giving. This week we have 3 dialysis days and 6 doctor appointments. I work full time, do the cooking, cleaning, laundry, animal care blah blah.
My boss, who knows me very well. Is always surprised when I’m tired. Like, you don’t have kids. Your guy stays at home. Some how He stays home is equivalent to his 35 y.o. stay at home wife, that cooks, cleans, kids, grocery shops, etc.... Last year his mom moved to our city to be closer to him (6 months out of the year). He would tell me it’s exhausting as she needed lots of help. She lived alone, cooked, cleaned etc. 🙄. I know he spent more time with her and that can be tiring because you still have to fit the rest of your life in. But is literally nothing to what I do on a weekly basis.
I have taken to just looking at everyone through the lense of won’t get it, unless they are the ones doing it.
Definately frustrating, I know.
A few gentle suggestions. Get mom some home health care aides (if you haven't done so already). Or, move mom closer to you and get some aides for when you are not there... Or, consider that it may be time for mom to move to assisted living. The amount of health care problems coupled with dementia is pointing that mom needs somebody with her - at least during the day. This is coming from a place of compassion for you, your exhaustion, and my expertise as an RN.