And the flip side of gladimhere’s answer: Don’t waste precious time (and mental resources) discussing your frustration and heartbreak with people who do not “get it.” Even if they mean well, they will only make you feel worse about something that already makes you feel awful. Keep an aresenal of pat answers on standby for the unenlightened. Save the real deal for people who understand - and your AC Forum friends.
So very true! It is pointless to share what life is really like when caregiving and worse if caring for someone with dementia, with someone that simply does not understand nor cares to understand. Save energy and time! Both precious and scarce assets.
It is heart breaking to watch the mental decline. Remember it is the disease , and not really her. My mom has become very sassy and tells me to go away, and does not like me telling her what to do. She says I should mind my own business. Myself, hubby and 2 sons, college age live with her, so I am not alone. My siblings are very helpful, always come when needed. We have a group text going all the time. I share all of the crazy things she does with them so they know what I am going through. Those who haven't been a care taker for dementia sufferers don't have a clue what it's like.
Start with a caregiver support group. There are many listed on the Alzheimer's Association website.
Then adjust to the idea that this disease is not curable and will progress at varying rates. Find help for you to assist mom. Make time for yourself, or the disease will consume you too. And keep coming to this site. There is much help and support here from others that have walked in your shoes.
Thanks for your thoughts gladimhere. I was going to a support group but juggling work, mom, dad, and fitting in my life somewhere in-between it got pushed aside. So joining a on-line support group would fit me better. And I love this site.
Take it one moment at a time. Try not to take her negative comments personally (or any other well meaning person for that matter). Find ways to take breaks; start a journal, go for walks, find allies (critical!). Keep her engaged with family photos, outings, and let her be if she's not in the mood. My mother was aware of memory loss in the early stages, but over the last 10 years, has become very child-like and bewildered. Yes, it hurts to witness this, but remember you have your memories of who she was prior to...Care for yourself. Let her be who she is becoming. We are all in a state of flux, some more apparently so than others.
I think acceptance helps and it sounds like you are already on that road. Inform yourself on the disease and personally I found Teepa Snow (spelling?) quite helpful. In my family, a lot of friction happens when someone tries to "teach" mom the skills she has lost, or says she just needs "tough love" and to focus and try harder. Ugh! Surrounding yourself with supportive people who get it, and not talking about it to those who are clueless, can help you along the way too.
My mother is temporarily living with me while I figure out her next step.
Today she called me while I was with a friend and told me my pet was gone. She was hysterical and hung up the phone on me when I asked her to check the bathroom.
My friend saw how worried I was and we cut our trip short, I was driven back home. The pet was sleeping in the bathroom. Everything was fine.
My friend tried to give me advice as we drove back to get my car from their place, where we'd carpooled from.
I got angry because I was being treated like the problem was that I lacked social skills for how to talk to my own mother, that if I'd been more savvy, then she would have checked the room and not hung up on me while shouting/freaking out.
I let the anger percolate for a minute then said "that would be good advice if this was my mother from 10 years ago. But each month she is a new person and learning how to cope with her is a moving target. There is no solution or right way because for every day that goes by, she loses capacity."
And I realized what I said felt extremely true.
Coming to peace with the mother I knew being gone is a lightening of the burden because I can let go of all the old patterns and expectations and just do what feels right now.
I put up a Christmas tree and for the first time in her life my mother did not rip me apart because there was a nazi-rigerous and frighteningly stringent way to decorate a tree. I bought a bright blue, pre-lit plastic tree from walmart, and covered it with clip-on birds of all different species, with a sun as the topper.
She was delighted and referred to me as her "Christmas angel" while my jaw hung open. My mother would insist on a blue sprice of specifc height, lights hung first, primary colored large bulb, then multipattern tony white twinkle lights, double garland only clockwise, then ornaments in a precise pattern and order, tree topper made of delucate spun glass to be placed on top by a child (why???), special tinsel, then setting a specific speed of rotation on the electric tree stand. It was hell and I quailed even thinking about Christmas trees during my adult life.
Ad suddenly, I can put up a tree and there will be no insanity or negativity, just pleasant joy at the colorful spectacle. Holy sh**.
This new person may help you find resolution through the loss of the old person, it is a prolonged and painful goodbye but the bad goes away with the good and being free of those patterns can be healing.
Going through this for the last 7 years with my mom in law, from not knowing a thing when I started, to her being almost like a 2 year old, I find nikawriter's advice so true and wish I had that when I started on this journey. Just to add - do not expect her to think in the same way that people without the disease think, don't disagree with things that she says that you know aren't true. My mom in law used to ask all the time "when are we going home", and I used to tell her that we are at home (she lives with us), and try convince her of this when she didn't accept it, but all that did was stress her out, so I eventually learned to just say that we're going home just now. Patience is key and that is the difficult one, because we all have it in different doses, which is why it is so important to get a break any time that you can. Give yourself time, you will learn and adjust as time goes, and support and sharing experiences really does help.
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Then adjust to the idea that this disease is not curable and will progress at varying rates. Find help for you to assist mom. Make time for yourself, or the disease will consume you too. And keep coming to this site. There is much help and support here from others that have walked in your shoes.
https://www.agingcare.com/articles/communicating-with-dementia-patients-150914.htm
Updated August 23, 2018. Check it out.
Today she called me while I was with a friend and told me my pet was gone. She was hysterical and hung up the phone on me when I asked her to check the bathroom.
My friend saw how worried I was and we cut our trip short, I was driven back home. The pet was sleeping in the bathroom. Everything was fine.
My friend tried to give me advice as we drove back to get my car from their place, where we'd carpooled from.
I got angry because I was being treated like the problem was that I lacked social skills for how to talk to my own mother, that if I'd been more savvy, then she would have checked the room and not hung up on me while shouting/freaking out.
I let the anger percolate for a minute then said "that would be good advice if this was my mother from 10 years ago. But each month she is a new person and learning how to cope with her is a moving target. There is no solution or right way because for every day that goes by, she loses capacity."
And I realized what I said felt extremely true.
Coming to peace with the mother I knew being gone is a lightening of the burden because I can let go of all the old patterns and expectations and just do what feels right now.
I put up a Christmas tree and for the first time in her life my mother did not rip me apart because there was a nazi-rigerous and frighteningly stringent way to decorate a tree. I bought a bright blue, pre-lit plastic tree from walmart, and covered it with clip-on birds of all different species, with a sun as the topper.
She was delighted and referred to me as her "Christmas angel" while my jaw hung open. My mother would insist on a blue sprice of specifc height, lights hung first, primary colored large bulb, then multipattern tony white twinkle lights, double garland only clockwise, then ornaments in a precise pattern and order, tree topper made of delucate spun glass to be placed on top by a child (why???), special tinsel, then setting a specific speed of rotation on the electric tree stand. It was hell and I quailed even thinking about Christmas trees during my adult life.
Ad suddenly, I can put up a tree and there will be no insanity or negativity, just pleasant joy at the colorful spectacle. Holy sh**.
This new person may help you find resolution through the loss of the old person, it is a prolonged and painful goodbye but the bad goes away with the good and being free of those patterns can be healing.