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."
Don't guilt trip yourself. Come here and vent. Avoid the negative nellies who judge.
"That time mom fell because she refused a walker and stayed in hospital for weeks/months?! Good times, wish I could go through that again!" - said no one ever.
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.
Rhetorica, I know exactly how you feel and I have to admit I'm glad someone understands what and how I feel regarding caregiving. I'm honestly surprised at those people whom I thought were my "friends" turned out to be "frenemies". It really shocked and hurt me. Just now, I found your post wondering if this had happened to anyone else, because I just got that same smug judgmental crap from a coworker "friend" telling her how I've had a hard time with Grandma lately. "Well, I hope someone is understanding when it's YOUR turn! Someday you're going to miss her!" No, honey, someday I'm going to miss NORMAL Grandma, not this bs. I love my grandmother dearly, I don't mind taking care of her because she's always been good to me. She is mild by comparison to others' plights, but that does not mean that this is easy- it isn't. There are days I want to put my own head through a wall. I'm doing everything I can think of to try and help her, but I can't do everything. And she doesn't help by resisting all sorts of help. But somehow people BLAME ME for things that are NOT my fault! I can't make her do stuff she doesn't want to do or refuses to do! It is absolutely insane the stuff people judge you for.
I hope that when the time comes for those critics that people are more forgiving and understanding for them, and they realize that being a caregiver is no walk in the park! We need all the love, kindness, empathy, and support we can get!
It would be nice to be asked as a caregiver "what do you need" or "how can I support you", and sometimes you have to figure out what works for you because no one else will. For me: a hot cup of tea when I say I'm tired.
Don't second guess yourself. That was the best thing a medical professional said to me.
Want to walk. That was the best thing a friend could offer.
All the other responses, usually you have to dismiss as crap.