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 saw that your dad is a Veteran and so I wanted to offer you some advice - call your local VA and ask to be connected with a social worker who can help you with the paperwork & process of getting your dad the resources he is eligible for. That one person will tremendously cut down on the amount of time and energy you will need to spend.
Trust me, you will be amazed by what they can help you with
I have two sisters that can't talk to each other without yelling - even at over 50. I'm POA for my parents. They have 24/7 caregivers that mess up meds or don't take the blood pressure as described, or take things from the house or....
I've been doing this since November 2021 when my dad had a stroke. I have a wonderful husband that puts up with it. I have 3/4 paid work that is mostly "online" so it mostly works. I'm about to head to AZ for a month to get the pool redo (pump went out so now is the time) and Dad thinks I'm getting the house ready to sell. I simply said it has to be done and I expect you to be here in three years when you are 90. No one uses the pool, but the real estate agent my mother insisted I get to know, insists the pool has to stay. OK.
Mom has short term memory loss for sure. My dad is slowly losing his capability of remembering or doing things even with what he can do (left side doesn't work correctly because of the stroke).
They both act age 3 sometimes. I've been the parent since my dad's stroke. I keep them informed of decisions and ask them to help if they seem capable in the moment. My dad picked the colors for the pool, but not the fact it was getting done or the timing.
Thanks to this forum, I keep the "take care of yourself first" saying in my head. Without me, three families get lost (I also take financial care of youngest sister - recovering drug addict). SO - put YOU first and know there is NO perfect situation, only making the best of what you have. AND grateful every moment that my parents are still here. I still hear stories or pieces of stories I have never heard before. I focus on the good parts and live through the not so good.
You want to continue the illusion that they’re independent. They’re not. And that’s not your fault. Nor is it yours to prop up. We do this .. try and shield our parents from the truth .. but it just makes us anxious and miserable knowing the shoe could drop at any moment and they’ll be upset. (You are upset right now. Why is it okay for you to be upset but not them?). You don't control reality. Try being bit more clinical about it. None of this is your fault or doing. What harm would really come from the truth? What if you didn’t do 5 hours a day. What if you did 5 hours a week … would they even notice?
Lower your expectations of the AL. If they were on their own, would they get as many hot meals? Would they have an activity director or somebody looking in on them everyday? They’re not at the Ritz. What other option is there? This is the only choice. AL. You didn’t design the system .. but they have a brain disease and need care. This is sadly what care looks like for a ridiculous amount of money each month. Be thankful they have the money! My mom will run out soon and that’s enough to keep me in constant anxiety when it’s not my fault or responsibility. What’s happened and is happening to your parents is not your fault or responsibility either.
This all probably sounds harsh - but I hope not. It’s said in solidarity of this insanity we are all in and somehow unable to get ourselves out of. But that’s the thing .. our parents aren’t going to help us get out of it. Only we can decide enough is enough. Take a full day away just to see what happens. Unless there’s a fire or somebody has fallen and cannot get up … whatever nonsense it is can wait until the day after that day off. If they noticed a missed med .. they can press the button for assistance. If they didn’t notice - even better - there are no good drugs. Dementia or whatever problem they are taking the drug for is not a (insert drug name here) deficiency! Cancer is not chemotherapy deficiency, as an example.
Wean yourself off the crazy. It’s time.
My sense is that before you make any decisions, you need to come to terms of what you will and can do - then figure out the 'how.'
- Part of it is being aware of how you are affected emotionally/psychologically (i.e., are you feeling / anticipating feeling guilty if you change your behavior / schedule (of care)?
- Are you feeling angry now of all that you have done and see the writing on the wall of what is to come?
While I say "absolutely not" in response to your statement:
"GIVE UP ON THE REST OF MY POTENTIAL LIFE"
This is something you need to ask yourself. What quality of life you want / with your husband ? as your parents decline?
These decisions are gut wrenching hard. - and they are very difficult to make. With this said, you DESERVE a life / a quality life of your own.
* As other(s) said, can you move your parents closer to you if / when you move?
- Expect that your parents will react emotionally - not want to do what is necessary (for their benefit, and yours). You listen with compassion, you do not argue, then you do what you need to do.
Perhaps 'most' of the difficult part is not absorbing parents' demands or acting out (however they respond). The more you expect their behavior, the more you will be prepared in how to respond in ways that work FOR YOU, i.e.,
"I hear you mom." (Then change the subject)
"I know this is hard for you mom; it is for me, too."
"Okay, I understand and I'l do xxx" (then do what is necessary).
* Can you / they afford caregivers / anyone that can relieve you of all you took n, incl legal responsibilities?
* Consider hiring a med social worker (many work ind. Get referral thru their medical provider - or try yr County Senior Services Dept. Sometimes, it is very helpful to get a professional 3rd party involved as your parent(s) will hear them differently than how they will respond to you. They know you and may know how to talk to you to get what they want (I don't know). You need to talk control here.
No one knows your specific situation as we are not in your shoes. We can only project how we can support you to do what is best for you while respecting them (as you are). I would suggest you get into short-term therapy if you can - to sort this out with a professional.
Expect to feel conflicted. It is the 'Buddhist' way ... to accept what is in the present. Making difficult decisions will bring up a myriad of feelings. Feel them.
If it were me, I would make peace with what I can do / am willing to do / acknowledge ALL THAT YOU'RE ALREADY DONE ALREADY... which is a lot and feel you deserve a life of your own.
My heart goes out to you. Thank you for reaching out to us. I hope we can provide you some support.
Gena / Touch Matters
Dad either qualifies for VA Aid and Attendance benefits or he does not. If he served in the military during wartime, he qualifies if his savings is below a certain threshold. Call the VA in his county and find out once and for all. I had dad's paperwork done in short order once I gathered the required documents.
If you live "out of state" it must be close enough to commute to see your folks regularly and take them to "tons of appointments". See above about how to eliminate most of those.
Depending on what type of dementia they have, they are unlikely to live another 20 years. Vascular dementia has about a 5 year lifespan to it. Alzheimer's is much longer, how old are they???
My DH and I traveled once a year for 2 to 3 weeks to Europe or Africa while my parents were in AL and even when mom was in Memory Care Assisted Living. It's important to refresh yourself and recharge while the folks are being cared for. I had no siblings to help me, just my 2 kids to cover for me while I was gone.
You have to find a way to release yourself from THIS level of involvement with your parents who pay for care in AL. While there IS quite a bit to do for them, don't make it your life's work. Find a balance between helping them out AND living your own life. Whittle down the days and hours you spend doing for them to a minimum so there's time leftover for you. Otherwise the resentment can build up to a point where you feel like you're drowning with responsibility. That should not be the case when they're living in AL or Memory Care Assisted Living.
I agree with you that dementia is a cruel affliction and a no win situation for all concerned. I wish you good luck and Godspeed as you find peace with all of this, peace and balance.
My suggestion is to prepare now for a facility. If done properly with research, it could take a while. So many questions to ask, so much to be covered. I would also suggest that if you know they will not be able to remain at home, to move them earlier in their dementia trip. I would start with talking (a lot) about moving to a facility. Early in their dementia they are able to better understand and can help make some decisions about where they live. We were not able to do that and have paid the price. Lots of confusion, depression and anger.
I hope you can benefit some from my post. Wish you well. It’s a long journey for you also!
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.
I have read all of your responses and agree with some and disagree with others. I wasn't clear either, are you planning to move out-of-state and wondering how you are going to continue managing all of this?
Sometimes the answer is right under your nose. You said you were moving to NC. The Southern States are much more user-friendly for the elderly than any other part of the U.S. I re-located this past January to this area for this reason.
Perhaps, consider moving both of your parents to an IL in NC.
Where we reside is an apartment at an IL with all of the tiers. The doctor comes to the apartment, the pharmacy is next door, the x-ray tech comes into the apartment for chest x-rays. This is part of House Calls MD.
But, you cannot jump ship now with 2 elderly parents with Dementia. I am here at the facility with my mother due to Corporate Greed. Assisted Livings as I have said in the past is "real estate". There is no assistance, everything is a la carte, you bring everything in and you pay for it. You basically get a studio apartment, maybe a one bedroom. Owning a place like this is better than playing the stock market, so Rich Dad Poor Dad author is now telling people.
You have to physically check your parents for bedsores, have they been eating. Do NOT assume this will be done because you are paying a lot of $$$. Are they wearing cleaning clothes?
Don't kid yourself folks, all these places can't find or retain help. The ratio of help to the elderly at night is either 1:20 or 1:30. So basically, the chances of a call button going off more then 1 at the same time is high, especially in that age group.
Nurses that are residents here in IL tell their kids don't put me in an AL. Everything is a 3rd party contract. There's no connection to the individual. There have been mistakes with missed blood thinners which can cause strokes. Call buttons have gone off and no help has come because they don't have the manpower. The staff is overworked, short-staff and underpaid. When they return home at night they usually take care of their own mother who usually resides with them and they are usually people of color or from other countries.
The Aid & Attendance is VA Program that is a lengthy process that could assist in financing this. Your parents need to be checked on "in-person". To try to bring up the past at their age, why didn't you come to my ballet recital, now it's payback time is ridiculous. My Lord they must be in their 80's.
Medicaid and Aid & Attendance do not play nice in the sandbox. If you put your parents on Medicaid you may be bypassing Aid & Attendance. You need to speak to a professional, an Elder Lawyer.
The IL and AL do not take Medicaid for room and board. The Medicaid Nursing Homes back home to be frank were all crap boxes and I don't want my mother in a urine stench crap box.
Not everyone may agree with me and that's ok. I had a fabulous childhood, 2 great parents. Never thought I wouldn't take care of my mother. Dennis Prager one of my favorite talk shows hosts said something so profound:
The Lord knew it would be hard for us to care for our parents. He said to Love your neighbor as yourself but to "Honor" your parents. Not everyone feels lovey dovey toward their parent so if you have to take care of them, it can be difficult. It's difficult anyway, but I love my mother. I don't want strangers caring for her.
Years ago, people just did it. They took people in. There were no facilities around. This is a new concept, for the rich. Now Americans are outsourcing their parents to Mexico. There's videos on YouTube. Hey Mom I'm moving you to Mexico, remember you said you like tacos. That way I can just fly in and check on you and then travel. The mother responds, "Mexico, who do we know in Mexico?
There has to be a happy medium with I have to live my life.
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!!!
I had to get help. My parents both had Dementia. I had to wait until my dad went to the hospital. My mom's health declined. I waited for her to be hospitalized. Then I obtained court appointed guardianship. I sold their house. My dad died from CHF. Mom is dying in a personal care home as we speak.
We are living too long. Please heed the warning that you must get your parents help.
No adult child "has to" take this on: period! Full STOP!
If they have resources, tell them you are stepping back and will hire/pay for a care manager from their resources. If they object, OK. BUT STILL STEP BACK. Like with children, they have to experience the consequences of their decisions and YOU CANNOT CONTROL THEM. All you can do is CONTROL YOU! You can say NO, not doing it, and offer options as solutions: paid care manager who takes over on all the MD apts, transport, errands, etc. NOT cheap, but their call to spend OR NOT as long as YOU are firm in YOU ARE NOT DOING this -- all of this solo, on your own moving forward.
And what if something happened to you, sickness/accident, etc. then what? Having that care manager in place solves that issue. How can you take an extended vacation and "leave all of this behind?" A care manager handles it for you.
If they refuse, then it is on them. One can call adult protective services and say they are NOT safe and perhaps guardianship needs to be sought if they cannot handle these types of activities on their own: setting up and going to MD visits (or the Independent Activities of Daily Living).
Assistive Living may not be the proper placement for them now as their needs appear to be greater than perhaps what their AL offers? Again, one can hire more help and care managers IF THEY can pay. YOU DO NOT PAY!
Please step back, and start mapping out a plan for you to care for you and your husband/kids. Mom and Dad as others have said have lived their life, let them continue living it as they choose irrespective of the consequences as those consequences are theirs NOT YOURS.
Also, you might find it helpful to get with a talented therapist to unpack and worth through all of this. An elder care attorney (they pay for) can help with legal matters including setting up guardianship if that is a solution that might work.
Good luck with all of this. Adults need to plan for this, as it is on each of us to do this and NOT EXPECT our kids to do it all 24/7. Not reasonable much less sustainable.
Maybe ask your parents why they expect you always be there for you, when they didn’t stick around for you when you were younger and needed them? They didn’t have a problem deserting you.
If you think they will show gratitude or love or recognition to you, you are mistaken. They didn’t care about their kids so much until they got old and needed you to pamper them. You had this role assigned to you from birth, but they didn’t tell you until it was showtime.
You say you are "taking them to appointments".
You say you are contacting the "extremely expensive facility" they are in to discuss their meds.
You say that your sister is living out of town and is "assisting with managing finances". That only sounds like confusion, to me.
And you say you are doing all of the above while "living out of state".
Or is it that you WILL BE LIVING OUT OF STATE.
You must forgive me. I am so confused here by who is doing what for two seniors who are living already in extended care.
My brother went into ALF at the other end of our great State of California when he was diagnosed with probable early Lewy's dementia. I admit that the first years was the burning fires of Hades for me as I arranged everything so that I was Trustee of his Trust (with his having an allowance account) and POA for all finances and bills. However, once that was arranged it all went like clockwork.
I would consider ONE person taking on POA and that person hiring a financial Licensed Fiduciary and/or manager such as Geaton suggests.
What your parents EXPECT and what you have to offer may be very different things. YOU, as a responsible grownup are there to tell your parents what you CAN do and what you canNOT do. This isn't a discussion. It is saying what you can offer and what you cannot.
I suspect much of this is the division of all the siblings and the not knowing who is doing what, and I suspect this is something that would take ME 5 hours on the phone to untangle. There needs to be a more central ONE PERSON management of all this so that you can get on with your lives.
I wish you the very best.
2) Why are you doing all this?
Now that you have already put in so much time and energy to take care of them, your parents will expect you to continue. But you do not need to take care of them! Just stop going over for every little thing. Let them hire an aide to help them with those things. Let them fail, if they refuse to allow any other options than to let you take care of everything. They feel they are doing just fine on their own, because you have been propping them up. When you let them know you can no longer do this, they will have to find another solution.
Now is the time to have your parents assign someone (whether one of their children, or someone else) to act as their POA. They will need to fill out a form for POA and sign it with witnesses or a public notary. Don't wait until they are already mentally incompetent.
If you end up as their POA, that does NOT mean you have to take care of their daily needs! But it does give you some control over what decisions will be made for their care needs.
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.
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.
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.
It’s a tricky balance taking care of them and maintaining our wellbeing. But you have to make your self-care a priority. That doesn’t mean you can’t be there for them. But in doing that, you gain resilience for you, your family and them.
That really helped me with my Mom who lived with me and was dependent with care. And with my aunt who doesn’t live with me, but is more mentally challenging. I also learned to delegate what I can. Important.
There’s always going to be “something”. Choose your battles (things you can control) and let the rest go. Opinions, comments made, people choices… not a “you problem”. Don’t take it on.
It sounds like they’re in the right place. You’re doing a great job except the unnecessary “weight”/burden you carry.
Prioritize self-care/love and I’m hoping it will give you balance (physically and emotionally).
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.
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
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!