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."
Those whose parents pass away before age diminishes all their most important character traits cannot possibly relate to "caring" for the shell that remains. Even the word "caring" is a mockery. The person you "cared" about is totally gone. You are doing a duty of service to a stranger who inhabits what is left of your mother's body. Ignore those who are critical. Their comments are as relevant as an American baseball lover's comments about cricket.
Above all, keep in mind that your emotions about your mother's current state have nothing to do with your feelings about who your mother was 20 or 30 years ago. Nobody has the right to fault you in any way for your attempts to assist your mother. You are very much entitled to your own feelings. I am sure there are days when you wish she would pass on and give you both a rest. Do not be ashamed of those feelings, they are natural, but don't dwell on them either. When everything gets to be more than you can deal with, do not hesitate to let your mother know that she must get help or go into residential care. You do not need to martyr yourself, that would do you both a misservice.
Sure, it’s easy to say I wish after the event but I doubt those wishing were the primary carers: I’m relieved for my parents that they are at peace and out of pain. I wouldn’t want them back the way they were - I have wonderful memories - even through the tiredness of caring.
To the unthinking friend who’d like her mum to call her 21 times too - I’d suggest you offer to let her take on your mums calls for a week !
Just say to people whilst you are are grateful for the time left with your mum there are aspects that are very draining physically and emotionally and you’d appreciate any moral support they can offer to keep you going.
I used to ask folks to send me jokes - it didn’t cost them much in time - but used to let me know they’d thought of me long enough to send a funny. Some of them arrived at just the right time when I needed a light moment amongst the stresses of the day. Didn’t matter if it was old and corny or even close to the mark of present situation - those jokes helped keep me sane.
It sounds like your friend hadn’t had to deal with a similar circumstance to your situation. Or if she thinks she did - time has obviously mellowed the difficulties.
Chin up - and chat here with us instead!
Regards,
I'm not sure if your Mom is incontinent--mine was, and my favorite stupid comment was "well, she changed your diapers when you were a baby". Well, babies grow up and become independent. Sick elders only get worse, and it's just sad all around.
One relative texts to say they are thinking of us, but never calls to actually hear how we are. Probably because they don't want to risk being asked for help. Brother never calls to check on Mother or talk to her unless I call. Mother's brother and sister the same. I was consumed with anger that we are not worth the effort. Now I've just accepted it and moved on and surrounded myself with those that have genuine empathy.
I'm not rude about it, I just don't go out of my way, same as them.
I'm sure at the end I will be the B, but I really don't care. I've got big shoulders, that's why I'm doing what I'm doing, and they can just bite me. Lol.
I must admit that in the past I have fallen into each one of those categories.
Your audience is inconsiderate and self-interested, not something you need. There is nothing harder than what you are doing. Make sure to include what's right for YOU in this situation.
I walk a very thin line between helping/caring and harming/valuing my own health. Please be very, very, kind to yourself and take good care! ~Kim
I live in California and all of my living family lives in the Mid-West or East, except for my son and his wife (they are older and just married last September). They both have demanding full time jobs and are trying to start a family. They come and visit when they can and sometimes are here long enough for me to get a quick break, during which I do laundry or grocery shop.
My mom has progressive Dementia since I moved her here from Ohio three and a half years ago. She has severe arthritis in both knees and one frozen shoulder. She is unsteady even when using her walker, so must be assisted to the toilet or doctor appointments, etc.
I was not trying to ask for sympathy with this message, just giving background. Yes, I am delighted that I still have time with my mother, yes, I am glad she is living. However, the types of statement friends and loved ones make regarding that fact are not helpful, and as you said, can make you "feel guilty". My family is doing somewhat the opposite. They tell me I have done more than anyone could to help her these past few years, and that I should place her in a Memory Care facility. They tell me what I already know - it is not good for me to continue this way.
We/she has no money for a private pay facility. She does have MediCal (Medicaid), but I understand there are limited places that accept it and there are long waiting lists for a bed. I recently got approved for receiving payment from the state for the care I provide, which will help us financially. However, I still need to find a trustworthy caregiver, for the times I need to go out to doctor appointments, laundry and shopping.
I agree so much with the comments to you about, answering they way that they have recommended.
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.
I would just chock those comments up to ignorance of your particular situation and not give it a second thought. People who have been where you are understand.
You hang in there okay.💓
If anyone can’t empathize with what you have posted doesn’t have a heart. I mean that.
They aren’t just ignorant but they seriously don’t have a heart.
I’m so sorry that you have been through so much. My heart breaks for you. You’ve been through so much.
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.
Maybe they tried to honestly express their feelings/struggles, and instead of getting support, they were met with resistence and told to suck it up, so they had to be "pleasantly fake" about the whole thing while shoving their true resentment down, which makes them take it out on us.
Not exactly defending these people or saying their right, but this is just my thoughts on why some people might react the way they do. That or they just don't really know how to handle our venting. No matter what, folks, we will always have AgingCare.com to vent to, and I'll gladly lend someone an ear and a shoulder.
You ARE enough and you doing a great job, so stay awesome. This isn't easy, so please be kind to yourselves and each other. Love and support to you all.