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.
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.
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.
If you want to give this friend an eye opener, ask her to visit your parents with you one day...say you could use her help with something or whatever. It might be educational for her and might help with a little empathy for the residents. And for you. But if she’s not worth it as a friend, just limit your contact.
They all act "how bad can it be?" with me being pretty much the only person (my dad tries to help but he's 70+ and can realistically only do so much, which isn't a lot) taking care of her.
The lack of sleep for days on end, the not eating because I never take the time or am too stressed, barely being able to take a shower. Having not gone out or socialized with another human being in almost 3 years.
Then they have the gall to ask me stuff like "why are you getting so thin?"
I actually once over heard my sister (who's almost 40 and lives on the property in a trailer, real winner) tell my siblings I don't do enough and why don't I/I should have a part time job in between the 24 hour care, doing all the house chores/cooking, and running all the errands.
The only person I ever knew who understood the burden was a friend who had taken care of his drug addict mother. He's moved away now.
I remember grumbling to a co-worker about need to drive my parents all over the countryside. She was shocked that I would even be complaining since my parents drove me everywhere when I was a child. I fired back, "that true, but my parents were in their 70's when I was a child... big difference".
My folks were in long-term-care, and in Memory Care. Yes, they were being taken care of, but it was the years prior to them moving that had slammed my well being. The stress just changes to a different set of stress points. Like the telephone. Oh my gosh, whenever I saw on Caller ID one of the facilities were calling, I was like jello and couldn't stop shaking for the rest of the day. The facilities had to call any time one of the parents had a fall, or were being taken to the ER, etc.
Then the MAJOR stress of having a boss who had a heart of ice, who didn't understand or cared to understand whenever I need some hours off.
Thankfully my current boss totally understood, because his wife had Alzhimer's for many years and he was the main caregiver for awhile until he hired a caregiver.
Best of luck & here's a big bear HUG for you today!
I an the 24/7 person for my wife, about five years now. Between us from prior marriages, we have 7 children and one grandchild who is an adult and lived with my wife and me when her mother, one of my wife's children, took off for 7 or 8 years "to find herself!" None of those eight have even voluntered to discuss a possible, mu;ti-generational home of theirs to live in together! (Cher in the movie "Moon Struck" had a 3 generation home)
I now "joke" about the companies that tell you they can help you find a home for Mom but I believe they should add on to that sentence "as far away from you as possible!"
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.
Unless someone has been in the same situation they can’t understand.
Grace + Peace,
Bob
When people ask about me taking care of DW I tell them it is 27 hours a day. And I mean that. Even in my sleep I am dreaming of taking care of her and things that can go wrong.
Raising a child is a teaching and growing experience. Careginving is just the opposite. We are the ones learning, not our love ones. They can no longer learn, let alone remember. Simple things are a challenge. She knows that coffee needs to be poured but, not into a flower pot or onto the kitchen counter. Even when we are not in visitable contact with them we cannot relax. We must listen constantly for changing sounds or lack of sounds.
Currently one of my biggest problems is to get her to step into the bathroom. She sees the transition from carpet to tile as a threat. She is afraid of doing it. Then if I do get her into the bathroom she will not turn around so as to sit down. All of this is related to that fear of falling. How can an outsider possible understand something like this and then give us advise.
It would have been so good for one of them to let me take a break while they changed a soiled underwear and wiped a dirty butt. Or had to jump up to stop a dangerous action and struggle with the wife when she insists on continuing the dangerous. To have to put alarms around the house to wake us in the middle of the night or even our own bathroom break. One quick swipe of the butt and run out to see what that noise was, why she is hollering,or which door alarm is going off.
"Well hire someone to watch her", And worry the whole time we are respiting about the quality of care the hired person will receive.
Time to take some deep breaths and calm down for thirty seconds.
Until the friends walk in our shoes, we have a constant battle only we here on sites like this can possibly comprehend.
I sincerely hope those people never have to experience what we are living today.
Try to ignore her and her opinions ... you dont really need someone like that in your life.
I used to explain to people who asked about my mother how difficult and painful it was to have my mother in a nursing home. People who didn't understand would be giving me suggestions on how to deal with the situation - like take my mother out for a ride (which would be very stressful for a women with dementia, in a wheelchair, has mood swings, has arthritic pain and incontinent), etc etc.
Some people would tell me how wonderful it is that she is in a nursing home and now i can relax.
So now when someone who doesn't understand or is not very close to me asks how my mother is, I just say "She is fine and doing well". And end it there. I leave the explanations for people and close friends who truly care about me and my mother.
It took a while, but i finally learned who I can talk to and who I cant. And who deserves a true explanation and who doesn't.
It is hard though.
Take care
I bet very very few did the care giving 24/7 for 27 months without a break. My wife did. I went to "work" (lucky me) When mom laid down, so did my wife. If it was quiet in the house mom would get up to see what was going on....nothing mom, just go to sleep. That didn't work. There were other issues that aren't pleasant to write about or read about.
Who understands and who cares? Not even the closest of friends or relatives. If you take on the job, I suggest doing it for love...AND money if there is any, because you will need it one day while you're trying to recover and the patient won't need it. And why would you do all the work just so the 'kin' can have a share of your work? It's not cold. It's reality. There is the love part and the business part. Just keep them separate and keep some kind of paper trail. I wasn't going to write this much!!
Nobody understands unless it's happened to them. I have a couple of close friends who have cared for parents and they fully understand. The others don't so not worth trying to explain.
I thought when my Father went to residential care my stress would be less . I now know he is safe,fed and clean but still have stress as he's not happy in there.
I have realised you have to look after yourself too and find some coping strategies. This is a good forum for support. I just visit now. I don't get into any deep discussions. When he talks rubbish I just say you are possibly right. If he mentions going home I make an excuse nd leave. It's not perfect but much better now.Good Luck.
I am astounded by the lack of empathy of this situation by others. Sometimes I wonder if I were not in this situation.. how much empathy and understanding would I have for a friend or relative going through caring for a loved one with dementia? I would hope I would never ask someone in that situation why would you be stressed?
There is not a day that goes by that I dont worry about them.. wonder when the next call will come that will turn my life upside down, grieve the loss of both my parents at the same time.. grieving continuously the loss of who they once were.
I have relatives who constantly ask me how they are doing. (my parents).. only really caring if they are ill.. well.. my parents will never be "fine".. they are losing their minds and abilities every single day, there lives have become so small ..it is heartbreaking. People think if they dont have some physical sickness.. other then dementia..that all is well..no..far from it.
Just wanted to say I understand the disappointment and frustration of not being understood. All I can say is find others who do understand, try to avoid trying to get these people to understand as you may be fighting a losing battle and just stressing yourself even more.
Take care of yourself through this.
(((hugs)))
Don't try to explain. Karma is a witch and when it happens to that friend, you can say the same thing she did.
Or you can say, "oh! are you beginning to understand now?!"
I was stressed just from having to drive 3 miles to my father every day. That's when I moved him into a mobile home in my front yard!
If that statement is made to you again here's a quick explanation I've used that may help, especially if the friend is a parent. This comes from a Support Group I attend.
"Babies don't have any concepts of the world or life skills, they learn and pick up everything as time goes on. People with dementia are in the process of unlearning, as time goes on they have less life skills and ability to think. Mother is currently functioning with the abilities of 3-8 year old. This causes her to have 'accidents', mishaps and confusion in understanding what seems so simple to us. Even though she is in a facility there are times I get a call because of this and also a lot of thinking and planning I have to do for her. It's like have a 3-8 year old son or daughter in a facility, which would be super stressful to the parents-right? "
I've used this sort of answer several times and the response from the other person does seem to indicate they 'get it' better. I also found I have more patience with friends and relatives since finding a Support group. You should see if there are any in your area.
Good luck and great job taking care of your parents. You've got double the stress I have. Take care of yourself!