How do I explain stress from caregiving to friends?

This may sound callous. After 3 years of dealing with my mothers dementia, I have found that nobody cares. Period. It’s incredible to me , but people really don’t care. Perhaps if our parent had a malignancy, or severe heart disease, diabetes, whatever, there would be more support. I agree with the comment made in an earlier post, if no one has walked your in shoes, they can’t possibly realize how hard this is

Until someone has walked in your shoes, they cannot ever really understand. Often they will think it cannot be worse than caring for an infant. Never once thinking it through. The constant need to be vigilant over every single detail all the same while as getting little to no emotional reward.
Many times elders with sever memory issues are either abusive and/or no clue who their daughter even is. This also just adds to the stress and debilitating efforts involved.

i am not sure there is any way to convey that knowledge in words.

Two of my closest friends, who are very caring individuals have visited my mom twice since her Alzheimer's became severe enough to where she couldn't function on her own. When she lived with me they each came out and brought lunch and we were able to have pretty decent conversation with her. Once I had to move her into a board and care (because her condition had deteriorated), they visited separately and sat a little stunned I think, while my mom talked incoherently while trying to keep up with the conversation. They have not visited since.

I think it's very difficult for people who have not experienced this encroaching mental deterioration to know how to deal with this and I would agree that only those folks who are walking our same path can truly understand what we go through. I have other friends who have lost their moms to Alzheimer's and their comments and questions are totally different from those whose parents died from physical issues.

I am still in charge of so much of my mom's life, even though I am no longer involved in the physical day to day care, and the weight of watching my mom mentally fade away sometimes feels like a clamp around my heart. When she has a bad day and is angry or agitated, or begs to go home (she has been there almost 2 years) I walk away from the home feeling as though my energy has been totally
depleted. And I still have to function with my life so with time, I have learned to compartmentalize my two lives for my own mental and physical health.

In the book/movie, Still Alice, the protagonist who has early onset, comments that she wishes she had cancer because people would organize fundraisers and rally around her condition, while with a mental issue, people don't want to get too close. Losing oneself so totally is a scary thought and many people don't want to be reminded of the potential for that to happen to them. I don't know the nature of your friends, but perhaps fear is an issue. A support group and activities that put you in touch with other caregivers is probably your best course for true empathy. I organized a team and did a Walk Against Alzheimer's and was surrounded by many, many people who knew exactly how and what I felt because they were feeling it too.

You are not alone.

It is a shame of the lack of caring for us as caregivers. It really is a sacrificial job with the only reward is knowing you are doing right by your parents. I learned early in this journey that the thankfulness come from the people you are taking care of and not from siblings or friends. Keep going doing the right thing and in the end you will have the PEACE knowing you did what was right by taking care of your parents. I have a friend who helped me take care of my mother while she was alive while family lied and criticized me, so there was no direct communication with them because I did not need the stress. These are the decisions you have to make while you are being a caregiver. People who do not understand or cause you stress is not what is needed. Empathy and understanding is what is needed as you see and witness your parents age. So I suggest you evaluate those relationships and choose social gatherings from people who can help you and not cause you more stress. You do not need that as a caregiver. This job is stressful enough!! God Bless you for caring!!

Has this person ever been the supportive type? I think that empathy is a character trait your friend lacks - anyone who is that clueless isn't going to listen to any explanations from you, it would be like trying to explain colours to the blind.

People honestly and truly don’t realize what intestinal fortitude it takes to be a caregiver for an adult. My own children don’t realize what my life caring for their father involves.

Short of giving these people a crash course in dementia and certified nurse assisting, they will never know. It’s not worth explaining. If a person has the opinion that it’s “nothing” and we have no business being stressed or anxious, I’d just turn and walk away.

You don't have to explain to anyone. It is complex and I don't think people who have not experienced it really understand. Both my parent have been in a NH since October of 2017. They are 3 minutes from my house and I visit at least every other day. I find myself buying things for their comfort often, paying their bills, and seeing to their affairs in general. It is stressful. It is difficult. It is emotional. It is worrisome. I have POA for dad and guardianship of mom. When I visit, it is almost impossible to carry on any kind of conversation due to dementia and Alzheimer's.

I sometimes tell people it is something you learn and will never use again and you wont understand until you have to experience it.

One piece of advice I would give you is to make sure you are taking care of yourself. And stop worrying about people who do not understand your situation.

Many people are under the illusion that having a parent in a nursing home means you’re hands off and you’re free as a bird. WRONG. Besides the need to visit your parent “just because”, if you don’t go the staff learns that and in many situations your parent automatically takes a back burner to their care.

If you haven’t walked in these shoes, you just can’t get it.

Unfortunately, you can't fix ignorance and you can't teach empathy. For anyone to ask you 'why on earth' you'd be stressed, knowing full well that BOTH of your parents are suffering from late stage Alzheimer's and vascular dementia is not only cruel it's the epitome of STUPID! Sounds like it's time to cut ties with your 'friend'.....you need supportive, loving, empathetic people in your life, especially now, nothing less.

Best of luck & here's a big bear HUG for you today!

The responder who said "you can't teach stupid" said it best...I can empathize. My good wife was in a nursing home for 12 years before she passed away...She had massive handicaps...I visited her twice daily...Even family did not understand the stress.

Grace + Peace,
Bob