My father died suddenly a year ago leaving a wife with severe dementia. I was the caregiver for my dad years ago and helped him get better after two years of living there.
When my dad died, I told both sisters we had to take turns. One sister can’t because of family issues. The other one has every illness in the book and drops out frequently. I have moved in and have help to work. My husband hates both sisters but supports/helps me. No discussion has helped. Just more lies of why they can’t do it.
I Know I am making this choice. I am trying to keep my promise. Yet the hatred I feel for the two or them makes me sick at times. How do I just accept this as a choice ? How do I let go of the rage of losing so many years?
I stepped up immediately, and started to initiate all that would be needed to provide care for Dad, who is in pretty good shape(he turned 95 this year). Once again, God has taken care of us. Dad has an aide for 3 days/10 hours and another one for 4 days/10 hours. Covid has been challenging but he doesn't go out, the aides protect themselves and dad too. He feeds, bathes, dresses and shaves himself. Gets around with a walker and has a great memory for his age. I have the aides walk him up and down the hall ( with gloves and Mask) 2-3 times a day. My brother visits once a week and AT LEAST brings groceries. If needed, I only communicate with my sister in-law by text, or email, to inform my brother of dads grocery needs and what not to buy him(he is Type 2 diabetic). I usually, if needed, take Dad to see his doctor. If I cannot, then I text/email my sister in-law to ask if my brother can take him( fyi, my brother is dads proxy). My sisters visits sparingly. When Dad goes to be with Mom(and God), I will move away and leave no forwarding address. Each of us make our own choices and in the end ... it will be what it will be! May God Bless you and your husband and provide you with all you need to care for your precious mother.
Believe me, I understand completely what she is saying. I, too, am the only daughter and, while my younger brother has been helping by caring for Mom for two weeks each month in his home, he has now decided that caring for Mom is "too hard" and he no longer wants to do it! HUH?? It has been suggested that we seek out in-home care, but I believe at this point, it is too risky.
So, looks like I will again become Mom's sole caregiver. She is 90 and her dementia is worsening and she is now down to 107 lbs because she does not feel hunger or want to eat. Truly, this is the hardest thing I have ever done in my entire 71 years!
One caregiver did come down with COVID, but did not transmit it to my in-laws.
Not sure what the plan is once nursing home residents and staff get vaccinated, which will hopefully be soon. Maryland only pays Medicaid for nursing home care, not in-home care, so a nursing home is the only way to pay for my MIL's care long-term.
Since neither of the siblings are 'caregivers' and refuse to help, approach the subject of them paying for care they refuse to provide. If you can get them to agree to house cleaning a day or two a week - it will help you. Pay for in home help so you and hubby can have a weekend away once a month, every other month or even quarterly. You may or may not get help that way.
There are people who will help their loved ones in this world. Then, you have those who think everyone is on their own. What you do for your mom comes down to 'what you can live with'. If you placed her in a facility, would the guilt eat you up when she passes? That's pretty much how I approach decisions I make - what can I live with. Yes, there is still some anger when you don't get help, Even if they don't want to help mom, you wonder how they can leave you to do it alone. The thing is, they are doing what they can live with and our hearts will never understand how it can be so little. Like many of us who post here, just do the best you can do.
Just because one kid decides that a parent must be cared for at home doesn’t mean everyone else has to agree. Maybe your sibs feel that your dad’s widow with dementia should be in memory care, or have paid caregivers to stay home, and that choice is just as valid as yours. Parents can decide that they don’t want to pay for long term care insurance and instead ask family to do it. That’s their choice. But the family doesn’t have to go along.
It’s better to focus on what you CAN control. Take an inventory of all the assets: cash, investments, house, insurance. Make a list of options: memory care, in-home caregivers, help from kids and the expenses of each option. Don’t forget ordinary expenses such as home repairs, insurance, and property taxes. Find out if there is a will or if trusts are already in place, find out who has power of attorney for healthcare and finance. Then everyone gets to decide together. Sometimes family doesn’t want to pay for care because it will eat up the inheritance, sometimes they don’t want to give up their own lives to provide it themselves...it’s complicated. But the TL;DR is that you have to make your own decisions. The decisions of your siblings can figure into your own, and you may decide that you don’t want to be the sole caregiver, but you don’t get to decide that the others have to help. If “shared caregiving” is not an option, what is left to choose from? “Abandon her at home” is criminal neglect so that’s not an option either. There is a compromise between those extremes that won’t please everyone, but sometimes such a compromise is all we can do.
1 - You can do all the work of caregiving and resent the family members who won't help. The only one who ends up the loser is you. The other family members will continue to give you excuses and will never lend help in any form, You and your husband will likely experience burnout if you do not have a good support network.
2 - You can accept that the rest of the family will not help and move on. Build a network of family, friends, members of your faith group, and paid help to lighten your caregiving load. You'll know when you have a good system when you can get 7-9 hours of sleep daily, have 3 good meals a day, have time to exercise, and time for social interactions and hobbies that do not include your mother. This division of labor will allow you to nurture your marriage while also caring for your mom.
3 - You have a couple of family meetings with all family members concerned/involved in mom's care. Make a list of tasks that mom needs help with. Have everybody sign up for ones that they agree to help with - whether they do it personally or hire somebody else to do it. Whatever tasks are "leftover" should be done by paid help. The money for the paid help should come out of mom's resources, not yours. If somebody shirks their responsibility, have a one on one meeting to discuss options when they can not or will not help out.
All volunteers take one step forward!
Siblings all take 2 steps backwards... :-/
"...your siblings will be at your side when mom dies and their inheritance is waiting."
I already predicted that OB (not local) was checking the trust balance when my one and only contact (email) in over 2.5 years was to let him know that mom had a stroke in Sept. I wrestled with even that, but my conscience said tell him. Why my prediction? He's always got his face in his phone, so he would have seen the email, late afternoon. 15 hrs before a simple response of "Thanks for update" Couldn't even muster a complete sentence. This from someone who got an OVERJOYED response during his visit years ago. Next and absolute last visit he refused to go back. Mom wasn't that bad then, he just "didn't know what to do with her." Jerk.
YB wasn't visiting - I used to send the invites for special occasions at mom's place, but it became more like torture for me, to keep pinging in order to get a response. Of course mom's on the way out and he shows up, stays overnight, putting on the "concerned" son act... Pffft. Jerk 2.
"...let go of the anger. You are only hurting yourself. Don’t let your siblings do that to you."
Yes, the anger must go. It doesn't affect them, but it DOES affect us! I poured out everything I wanted to say to each brother in emails, put them aside, did edits and updates, but never sent them. THAT allowed me to get most of it out, then just let the rest slide away, focus on mom and ME. Unfortunately, this is something we do to ourselves - the siblings are doing it. Their lack of help and/or caring leads to it, but WE are doing the actual hurt, so WE have to learn to let it go!
"After this is all over with my mom I will likely never speak to either of them and I’ll live happily ever after 😊"
I was already half way there with OB. Now that mom is gone, YB can go away too. I won't be reaching out to him.
Focus on your words: "...makes me sick..."
You need to realize that your anger and frustration, while understandable, is only hurting you, not them. Nothing you say or do will change them. You can only change yourself and how you deal with it all. Once this sinks in, work on ditching the anger and frustration. Been there, done that myself.
Ignore all the stuff about your choice of words, that isn't important. What I've suggested above can be difficult, but it can be done. Been there, done that!
I can't fit it all here, so my experience will be posted as a comments to this comment. Please read them, so you understand you aren't alone, and perhaps you can glean some help from how I dealt with this anger and frustration. It doesn't happen overnight, but it can make it better for you.
I did all the prep work, made sure all docs were up to date, took over bills, hired aides to keep her in condo longer, running ragged for errands, etc. The aide idea didn't work out, she refused to let them in. Then I searched for a place as neither bro was appropriate for care and I couldn't physically do it. I chose a place closer to me, as I knew I'd be the one doing most everything. We had to wait for it to be rebuilt, then I had them do the move (figured I would get the blame anyway.)
Once she was safe there, the next 1.75 YEARS of my life were sucked up by clearing, cleaning, getting repairs done to the condo. Visiting mom regularly, managing her finances, appts, supplies, etc. Minimal help from bros, condo only. When I tried to explain I couldn't do it all myself, OB exploded at me and bellowed "Give it up!" - no plan, no support, nothing. The last time he was here to work on condo, he visited mom once with me, and her reaction said it all - overjoyed to see him! I had him go there one morning before heading to the condo and when I suggested it again, he refused saying "I don't know what to do with her." How's about sit and talk, even if she repeats everything. Just BE there for her! Nope. Wouldn't go. Even if he was local, I doubt he would've gone again. It was sad to hear her ask about them, but eventually she stopped asking. That says a lot.
YB is still working (10 yrs younger), but it became a chore to get him to respond to queries about visits for special occasions (they want head count.) Once he asked an hr before the meal if he could still go. Just asking multiple times irked me, so eventually I stopped. Honestly I can't say if he visited after I stopped asking. I really don't think so.
I also was very angry, and after some flak from them I started an email to each one, explaining why this was an issue. I would set it aside, come back and edit/update later. At some point, I got it all out and to this day those drafts sit there. I realized nothing I had to say or explain would matter to them. If anything, it would likely result in even more flak. So, I left those and moved on. I realized while writing it that the anger and frustration was only affecting me. Writing it was like a catharsis - put it in there and leave it. It flared up now and then, but it's mostly in the past now. I can't change them. I can't make them do anything or make them care.
Last trip to help/visit, OB revealed that his abusive self from when we were kids never went away. He physically threw me to the floor twice. I ordered him out, and have not spoken with him in over 2.5 years, except to email him that mom had a stroke early Sept. Response took 15 hrs and was only "Thanks for update" I AM done with him, forever. YB isn't as bad, but based on his lack of visits and complaints for the 4x/yr appt I asked him to take over as I couldn't support her weight was enough for me - I can take or leave him. I won't seek him out. I suspect once all the paperwork is done, and the $ comes, I won't hear from him. Fine by me.
Last update TBD
The resentment raises its ugly head every once and awhile and I have to remind myself of the definition: Resentment is like taking poison and wanting the other person to die.
I am retired and live close to my 90 year old mother. One sibling lives across the country and the other an hour away. They both are still working educators amidst this pandemic. I have often asked their opinion in making decisions about Mom's care but soon realize they don't have a sense of how things really are with her. Her short term memory is becoming more and more fuzzy. She broke a hip a year ago and is still in her condo with overnight help 4 nights a week. She wants to cut back on the help as it is expensive. I have her on a waiting list for AL only due to waiting for circumstances to push the issue.
What feeds my resentment is that my mother had no plan for her aging. She is planning to live forever I think. She doesn't want to go to AL and can't see that in the long run it is cheaper than trying to keep up the expenses of her condo and the in-home care all of which I manage as well as her finances and doctor's appointments.
My father died from a 12 year bout of Alzheimers 9 years ago. Because I live locally I have been the point person. It has been a 20 year duty and I am tired. What I have found helpful is: having a good therapist, learning to set boundaries with what I can and cannot do for my mother (like committing to solving minimal problems on Wednesdays when I bring the groceries), wonderful friends who listen with empathy, a supportive partner, LETTING GO of expectations from my siblings (I struggle with this one), taking note of all that I am learning so that I can better prepare for my own aging and not be a burden to my own daughter.
I wish the best for all of us who are now called The Sandwich Generation.
Yes, the anger is debilitating and needs to go. I got it out drafting emails to each brother, but never sent them. It was cathartic to get it out. Sending them would just have incurred more flak, so they sit in my draft folder. Due to other issues I am done with OB (1 email after mom's stroke in Sept, but otherwise ZERO contact in over 2.5 years now.) YB, now that mom is gone, I can take or leave. I won't seek him out, but if he reaches out, maybe. OB isn't local but even if he was I doubt he would have visited or helped (based on last brief visit when here and refusal to go back.) I don't think YB was visiting, after I stopped asking him about various special occasions/meals. Trying to get a response was ridiculous, so I stopped wasting my time. Funny that he can come when she's near the end and stay overnight, but couldn't bother to visit when she was still okay. LOSERS. My mother used to ask about them, but eventually stopped. She did still ask/talk about me, even though we were shut out since March. I tried a couple of visits, one outside, one inside per arrangement, but between distancing, masks, little or no hearing, and dementia, I'm not sure she even knew who we were. One staff member took a pic when I was delivering supplies, and showed it to mom. She asked why I didn't come in, didn't I want to see her? THAT was heartbreaking for me. I never did get to see her, face to face, before we lost her. I still have her Christmas card here, unsent and I just received the one with a picture of her that they had prepared with her. Along with that card and pic was a card from the entire staff, telling me how much she was loved and will be missed.
Those two losers can go pound sand.
I am sorry for your situation. From my viewpoint we almost have the same since you receive no help from siblings. I only have myself and the years of hoping this would never come to pass.
You also call their choices “lies.” Really? If I had a sibling who called my choices lies, I would run as quickly as possible in the opposite direction and leave them to deal alone.
I understand that having had success with your father, you felt you had the key to helping your mom but this hasn’t turned out as you hoped. Every case is the same and yet every case is different. When you promised to care for your parent, that care can take many forms, including outside help and assisted living. Don’t let your rage blind you to other sources of support such as have been suggested here.
When I returned to the area and began taking over much of my mom’s care, I was very angry at my brother who had been her primary caregiver. The truth was he had made choices about her care which worked for him, and never asked for any help or input from the other three siblings. He complained that we didn’t understand what he had been going through. The truth was mother had been hiding her problems from the rest of us and he wouldn’t tell us what he needed fearing we would insist on assisted living to help with her Parkinson’s and that might require selling her house where he was living. We haven’t spoken since her death, and probably never will, but the anger is gone and only sadness remains. If he had asked for help, instead of sacrificing his life, who knows what might have been.
You did move in with your mom, so they might look at it that you're getting free rent and therefore taking care of mom in return.
If your mom can afford it, hire help to care for your mom a few hours a day or whenever you need it on a regular basis.
If mom can't afford it, tell your sisters that they need to pay for a Caregiver to help you out.
You also might make an agreement in writing, that when your mom passes that the house will be yours gor the care you're giving her and not be sold and divided between your non helping siblings.
Praters thst they come around and do their fair share.
Tell? HAHAHAHA, I wouldn't hold my breath on this.
"You also might make an agreement in writing, that when your mom passes that the house will be yours gor the care you're giving her and not be sold and divided between your non helping siblings."
If OP's mother has dementia, there's not likely a chance of getting a legitimate LEGAL agreement for anything, much less the house.
In the interim, what I learned was I had to ask for help, and be specific. They may say no, but at least you asked. I would ask my sister, look I want to go on vacation, can you come one of these 3 weeks? She did and I went on vacation (once in two years, but hey better than nothing). My sister literally flew in and out for the bare minimum of time - my mom was alone for the first and last day of the 5 day vacation, but she did it. My sister of course, went on multiple vacations during this time.
Other than that, focus on your relationship with your mom. Draw boundaries if needed, and work on accepting the realities apart from your sisters. I always call it the social contract you never knew you signed. My life was completely upended when my mother suddenly became sick and declined dramatically literally overnight. In my case, the caregiving was only for 2 years but it was intense and daily. It was hard, no doubt, made harder that I was left alone to do it. My heart goes out to you. Hang in there my friend and take it one day at a time.
ONE PERSON CANNOT DO IT ALL!
You cannot force others to do caregiving.
The most important thing to do is realize your anger and resentment affect you, not them, so why damage yourself? Don't waste brain cells on them anymore and just take that monkey off your back.
I totally understand what you're going through with siblings who won't lift a finger to help with the care. The ones who never help are always the first ones in line when it's time to inherit though. If you're keeping your mom out of a nursing home, then you need something in writing saying that you get compensated the caregiving. As for that rage you feel about losing so many years. Forgive yourself for having the rage. It's time to put your father's wife in a nursing home and take back your life. If you continue to be her caregiver that rage and resentment about all the years you put in will only grow bigger until it becomes your life.
Doesn’t have to specifically be kickboxing, but you get the idea. Fyi I call my big loaner martial arts bag, “ The Therapist”. It is, too!!
My mother is a life long narcissist and damaged all 3 of her kids in significant ways. I was the one who was groomed since childhood to feel responsible for my mother, under any condition. I remember bringing a date over to my parents house many years ago in my early 20's for a small party when my dad was still alive. We were having social drinks but my mom went overboard and was passing out in her chair. I was so embarrassed. I forget where my dad was, but I had to go over and coax my mom upstairs to first the bathroom so she wouldn't wet the bed from being so drunk, again, and then put her to bed.
The next day I saw her and tried to have a gentle conversation about how her drinking like that and me having to take her to bed made me extremely uncomfortable in front of my date. My mom flew into a RAGE and actually told me that I should be HONERED to help her to bed. Yes, she meant it. That is the kind of mother I grew up with.
I could relay many stories. The point is when my mom started wanting help the calls about "needing" to move near me started. I did move her, but I hate the word "choice" when I know full well I was manipulated big time, extremely anxious and unfortunately too weak to resist it. It's like saying someone chooses to be a victim of abuse. I also didn't know she had dementia, which as we know changes everything.
The first year and a half I gave my siblings a pass on being uninvolved. I understood why they didn't want to be around my mom. NONE of us do.
But going into year 2 and now 3, MY life has been so ruined by this, like you say the time lost from living my own life is time I will never get back. I feel like I've aged 10 years in 3 because of the stress. I have NOT badgered my siblings, but they know full well that I am suffering, pretty much daily, dealing with OUR mother.
My anger is because they have abandoned ME. Forget my mom, they don't care that I am suffering so much, and I've never been anything other that supportive to my siblings throughout our lives. Often being the first one called when help was needed, and I showed up for them both, many times.
Now I need them, just for moral support if nothing else, and neither show up. That's what hurts. They barely call my mom and when they do they just appease her, including when she complains about me.
I will never see them in the same light again. I'm angry and I feel like I have a right to be. This isn't about them and my mom, it's about them and ME.
I'm sorry you are struggling, and not getting any support from your siblings. The only advice I have is to try and take care of yourself the best you can, so you survive this journey with your mom, including when and if that journey means placing your mom into care. You will have a life after this, and your anger will probably wane, which will be good for you. That's what I'm hoping for, even though I know my relationship with my siblings will never be the same.
Good luck.