I have had a lot of stress lately from seeing to the welfare of my parents even though they reside in a nursing home. I tried to tell my friend this and her reply was, “Why on earth would you be stressed? Are they ill?” I nearly blew a fuse but remained quiet for fear of doing that. She knows my mum is in late stages Alzheimer’s and my dad in late stages vascular dementia.
You will find no better support than the good folks here that are living this right along with you. I don't know what I would've done without this lifeline. Even before I made a couple of posts here, just reading about all these things I've come up against, and how others have handled it, (and just knowing you all are there) has helped me so much. I don't feel so isolated, and I know beyond the shadow of a doubt that SOMEONE gets it, even if it's not the people in my immediate contact that I wish did get it.
So vent away here, we get it, we're giving you hugs.
Take deep breaths and count to ten, maybe....
Grace + peace,
Bob
You would not resent a blind person for not appreciating the Mona Lisa or the Sistine Chapel. You would not blame a deaf person for ignoring the Boston Pops playing Mozart. Trying to explain your concern for your parents to this person and then being angry because they don't get it is an exercise in futility. This person can still be a friend, if you want them to be, and if they have other qualities you value. But you may have to accept the fact that if you want to visit the Sistine Chapel, you need to choose a companion that can actually see it.
Most likely it will if their parents, direct relatives are still living. I know this sounds awful, I do. I have come to envy my contemporaries who are orphans. Whose parents are deceased and never experienced any of this.
Those who say you are so lucky to,have x or y still with you.
Am I now? You want to scream at them, come spend a week in my shoes.
In the meantime, you have this fabulous group of people. Who will listen, offer constructive advice, and know well, very well, from whence you come.
This board IS the port in the storm.
I haven’t read the other answers yet, but I’m sure you have heard-and experienced- that our life as caregivers tends to be very lonely, and that is because people either,
1- Don’t understand -as in don’t have a clue- about what our life is. Or,
2- They pretend not to understand, because understanding may imply actually being expected to help. Or,
3- They really, truly don’t care.
But like I said, in this particular case and specially because she seems to be aware of the situation (Alzheimer’s, etc), she is lacking the empathy factor...and I have to wonder, completely lacking empathy can someone actually be a good friend to you?
Think about that a little. If there is a benefit caregiving brings with it is that it helps us see things, people and situations and value them for what or who they really are and their significance, including “friends”. I’m not saying anything against her, maybe she is a good friend to you in other situations, but it is very hard for me to understand how someone can not have the intellectual and emotional intelligence to realize why you were/are stressed out, when the reasons are obvious, at least should be for a friend.
As to your general question of how do you get people to understand your life, specially as a caregiver, I would say you don’t. There will be some people that love you and care about you and will naturally be able to empathize with what you go through, but those sadly will be a minority. Most people fall under one of the three buckets I mentioned, until one day it is them who happen to become caregivers, and even then, some will never get it.
Keep your expectations low, and try to surround yourself with those few that not only can, but want to understand and even help along the way.
A hug to you, and be sure that here we ALL understand you!
That is so much the truth how can anyone be true to you if they can't apply the same feeling to other situations appropriately?
Thank you for your take!
please take care, and we share your burden!
Caregiversister
My parents ran into some financial difficulties a number of years ago. They refinanced the house. So now there is a mortgage. The nursing home is taking all of Dad's SSI money and this does not leave enough to pay the house payments. We went from recieving around $1100 per month down to $135.50 per month. Now, we don't have enough money to buy gas to put in the car.
I truly believe that the money problems alone can exacerbate the stress one hundred fold.
I am sure if they had they would not say it.
i understand , I get it ! it’s hard and your strong !
not everyone will get “it” !
keep in touch that is why there is
thank s web site.
Big hugs
If you haven’t walked in these shoes, you just can’t get it.
This is a very difficult part of life emotionally, mentally, and spiritually - as ONLY those who have gone through it can attest, appreciate, understand, comprehend, and empathize.
Friends who have been supportive and helpful at other times/events in life may not be able to relate to this situation unless they've gone through it - and often not unless they've gone through your particular situation (how much you are involved and what duties you are doing).
I actually found only 1 person that I knew in my life had gone through something similar to me - I took care of (was the 24/7 nurse) my mother for the last 3 yrs of her life which included bathing, food and drink by hand, changing her diaper and managing her catheter, and moving from hospital bed to wheelchair for change of environment and fresh outdoor air.
The only other people I found that actually related were people in communities such as this online one (and others) who did something similar.
*Know* that there are others who have gone through what you are, and will continue to do so. Bless you for whatever you can do, and try not to become discouraged at the fact it's hard to find others we naturally know that have done the same. At the very least I'd recommend reading stories or posts by people who have done what you have to get that "common human connection" of relatability.
Huge hugs from me. Take good care of yourself in the process - stretching, eating well, supplements if you decide to do so (probiotics have been amazing for me), some exercise (even brisk walks), and connecting/talking with others who can understand/relate.
JT
Arlene Hutcheon
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.