Does anyone else have both parents with dementia? We drew the lottery winning ticket with both. Both of them are not so advanced to need memory care and live in assisted living, so it is like a part time job for me still. Delicate dance between letting them feel independent and feel valued and having to redirect and fix issues is prevalent. I put in at least 5 hrs. a day between making their tons of Dr. appts, taking them to appts, researching how to stretch funds (dad is a vet so there is tons to research and lots of paperwork), doing their errands, contacting the extremely expensive facility to discuss missed meds or care not received that we are paying for, dealing with a brother that can’t be bothered unless the meeting is to discuss their money or what he could take from the house (but they think he walks on water). Then filing claims and follow-up, figuring out investments and trust documents, running groceries over, cleaning up and sorting papers, moving them to a new facility when the old one wouldn’t let them stay assisted but had no memory care openings (don’t need memory care yet/not a safety or flight risk). We (sister and I not brother) spent every other weekend for 6 months cleaning out 40 years of stuff and selling their home. Now I have to have mom asking nonstop where this or that wound up and getting upset that we got rid of so much. Exhausted and depressed is an understatement. My sister lives out of state and thank goodness is assisting with managing finances but the lion’s share of everything else and the ‘boots on the ground’ is on me. My mom and dad did nothing to care for their parents but expect that I will be locked down here to care for them. They didn’t even stick around to see me off to college. They moved out of state when I graduated to HI from MN. They were footloose and loving life by their mid-40s. My husband and I had planned to move this year to NC as our kids are in college there. I had to quit my job to manage all of this workload so the loss of income is substantial. They could live another 6 mo, 6 yrs, 20 yrs. Do I give up the rest of my potential life to be the only one stuck caring for my parents? I feel cruel even thinking about it, but my life doesn’t have any consideration for me in it right now. I feel so lost and resentful. I love them but this has me so under water. It hurts so much more deeply when my mom and I were so close and I could ask her advice. Now, if I say anything about my life or needing anything it is interrupted with her complaining about her care, a resident, staff or my dad. If I ask her to wait on something, she gives me this angry look that cuts deep. I know she is not herself, but it still cuts deep. I miss her terribly and this illness is so cruel.
I ask those that post the sorrow and guilt, to ask themselves the same question....what were parents doing in their 40s? Taking care of their own parents?
This is exactly WHY you need to begin the back off process. They didn't do it for their parents, so they cannot expect it from their own kids! Do not allow yourself to go along with being "locked down" whatsoever.
You have already set up what you can, so take your life back in a steady manner. After time, Mom may not remember you or recognize you. Let them adjust without running to them when they snap their fingers!
She is not the same person you knew. It takes getting used to it, since it's so depressing and sad. It is hard for people everywhere, facing the end of your life is brutal, but nobody gets out of it alive. Your priority is your husband and kids, your own lives. Make your plans, get a new job so you won't sacrifice so much. Enjoy your own family while you can. You already did the bulk of the work and got them into a facility. Consider yourself very lucky. Now focus on your own family you are truly responsible for. If you start feeling guilty, see a counselor.
Love them all you want, just don't become their caregiver slave. Live your life like they did, so you have no regrets. When you start feeling that pang of guilt, stop and think back about your parent's footloose and fun days, and how they didn't caregive their own parents, or didn't see you off to school.
Move to NC and have a blast. Stay strong and give your energy to your own husband and kids. Mom and Dad had their great life. It's your turn.
Good Luck!
1) The hurt. ‘I know she is not herself, but it still cuts deep’. It might help to stick to the other comment: “I miss her terribly”. Your mother is gone, what you have left is a person to whom you are providing (unpaid) care. Miss your old mother the way you remember her, but think of yourself as a caregiver and her now as a client. It won’t ‘cut so deep’. Be more businesslike about it.
2) With that comes stiffening up the ‘delicate dance’. They are NOT ‘independent’, and you don’t have to make them feel that they are. At least not to the extent that it makes things more difficult for you. You have as much on your plate as you can cope with, without scripting a fantasy performance. Chances are that you CANNOT succeed in making them ‘feel independent and feel valued’, at least not valued in that way. Don’t keep putting much energy into it if you are not succeeding anyway. After all, they know that they are in care, and why.
3) Be cricital of the “their tons of dr appts’. Elderly people at the end of life do not need the doctor for every small ailment. They don’t need an excessive number of regular checks. Doctors often schedule an unnecessary ‘check-up’ monthly or quarterly when half-yearly or annually would be just as appropriate. GPs can monitor for changes, without them seeing a specialist every time. And GPs can check on a range of things in the same appointment, which cuts down the number of specialists involved regularly.
4) ‘They could live another 6 mo, 6 yrs, 20 yrs’. No-one wins from prolonging life as long as possible, except the people with the big bills. ‘Comfort care’ sounds bit terminal, but it is basicly what they need. Your parents will become more ill with more problems until they eventually die. You can’t prevent it, just accept it.
5) When M asks where things are, the answer is ‘In our shed. I’ll look it out next time I’m there and have time’. Less upsetting for both of you.
6) Give the angel brother a check list of things that are his responsibility, and insist on getting it, completed, at least monthly. No money or assets until it’s up to date. Angels may some day fly, but at least it’s worth a try. Is there a SIL you can co-opt, to make sure he is up to date?
7) Schedule a holiday (at least a fortnight, preferably a month). Go to NC, with a list of things you want to see for yourselves, as well as time with the offspring. If parents are in a high end facility, they will not suffer too much, even if it’s not as closely monitored as you are currently doing.
You have done everything you can. The challenge now is to slow down on it. Yours sincerely, Margaret
Start looking into MC facilities NOW. If you have not already done so, make sure their affairs are in order, see an eldercare lawyer to see if they qualify or how they can be made to qualify for Medicaid. They are going to blow through their money if they both need to be in a facility and that's probably what's going to happen. Also be prepared that you won't see any inheritance when this is over. But you will have the taken your life back. That's just as important as money.
Be ready. You got this.
But are they *independant*?
TIme to ask yourself the hard questions;
Q1. WHY are you putting in at least 5 hrs a day?
"I had to quit my job to manage all of this workload.."
Q2. What if you hadn't?
I read resentment here. Right?
If true, it's ok to say it here.
Your folks could have planned for themselves & their old age better. They didn't.
Outsource everything you can.
As long as you continue to prop up your parents false sense of independency, they will continue to feel that they truly are independent.
All assisted living facilities offer services to take folks to their doctors appointments, to the grocery store and the like, so there is no need to be running all over for your parents. But yet, you are choosing to. I can't help but ask why?
Your number one priority is yourself, your husband and your marriage. After that comes your children. Your parents are really not even on your list of priorities, yet you continue to keep them at the top of them. Again, why? Things that make you go hmmm....
So take your life back, start planning that move to NC(you'll love it here, the weathers great!)and enjoy your immediate family while you still can.
I am so sorry that this is happening to you. I know exactly how it feels caring for one parent with dementia. For two, it must be unbearable. I will not write you a long note because many have given you great advice and I agree with a lot of it.
For me, it boiled down to one thing and that is, that I created a lot of my own stress needing to be perfect and needing to keep my mom alive. I was running around in circles. I had to let go to accept that mom will never get better, will never be who she was, and she will die. The risk that I was taking for not letting go, was that I would die before her or get sick due to stress and lack of self-care. I can tell you that since I came to this realization and started to change things, I began to feel an inner peace and joy. Letting go, is a process and we may feel guilty. At the same time, we are mourning for the loss of our parents that are fading away. It is hard and painful and many times we slip back into that superwoman role, but we remind ourselves to continue with this process one day at a time.
My mother is doing well. She is receiving care but not at the level that I was providing. I continue to visit her at AL almost every day. I simply sit by her side and talk, or we go eat together at her facility.
I wish for you to find this inner peace and joy and go to NC!!!
Their present does NOT trump your future, and the longer you care for them, the more it impacts your future. I totally get that you feel guilty (all of us kids do), but remember that they didn't care for their parents, weren't exactly there for you, you have your own family to care for now, and your parents are now in a very selfish and forgetful stage of their lives where they will suck the life out of you if you let them.
Make phone calls to them often to say "Hi", and perhaps help with filling out / submitting forms and documents remotely, but quit micromanaging everything else, as the more you do, the more they will expect you to do. There is meals on wheels, or if they are in a facility, they can provide meals. Family caregivers often pass before the people they are caring for, and again you have your OWN family that depends on you....your kids are growing up with you not being available to them....and you don't want this to impact your marriage. Please do NOT discount what the stress is doing to your lifespan.
Best wishes.
I’m curious why they could no longer stay in their old assisted living facility. It sounds to me like an evaluation was done and they were recommended to move to memory care. It may seem like they don’t need that yet, but maybe you need another evaluation to be sure. Memory care is a whole ‘nother kettle of fish, but one step at a time! :)
You do not have to put your life on hold to care for your parents if they are already in a care home. They may not understand, but that is part of the progression of the disease. And you are correct—it is a very cruel disease, especially for the family. Those who suffer from it do not fully comprehend their situation or what is happening to them, but those who love them have to watch them decline and slowly lose their memories and who they are…I wouldn’t wish it on my worst enemy!
Take care of yourself and good luck! Please reach out for some support.
When aunt developed dementia, unbeknownst to me, she had named me springing POA. Next thing I knew, the family out there were all over me expecting me to drop my life and pick up and move out there with aunt to care for her. I did what I could and saw I was in over my head. I suggested to the family that we sit down and discuss putting aunt in care she deserved. NOOO. They don't want to do that. NOOO. Aunt doesn't want someone coming to the house caring for her or staying with her, even though she needs 24 hour care. I had to be the solution.
I made up mind that I wasn't going to be the solution, as I didn't cause it. I gave up POA, made everyone angry, and let the family aunt chose to move closer to deal with it.
I got my life back. I still send aunt care packages, but that's as far as I go.
Glad it worked out for you.