I am 73, my husband, also my children's father is 75. He has dementia. We have 3 grown children. Neither of us have great health. How do I apologize to my children now for the help we will get from them as time goes on? How do I handle that one does much more than the other 2? I would like to pay someone outside the family for all our needs but that is not possible. I try very very hard not to call on any of the 3. I actually enjoyed caring for both my father and my mother when the time came but it seems young people of today don't feel the way we did. Any suggestions?
Apologizing is not really the way to go, especially before knowing if or when you might need extensive assistance from your family. We never know what tomorrow brings (see my example below). You should not have to apologize if you ask for help anyway. If they are balking at helping, then perhaps they are overwhelmed with their own issues. Perhaps they do not feel qualified to do the things you are asking for. Your statement does not provide enough information to make an assessment about this. Plan ahead for your discussion and include questions for them about what, if anything, they think they can do to help. Ask if they need or want reimbursement. No judgements. No assuming. No recriminations.
You have received a lot of very good advice in the comments:
**In particular I highly recommend the tasks of preparing for the future yourself, for whatever it may hold. Visit with an Elder Care attorney to have all the appropriate documents put in place (DPOA, medical directives, assessing assets and putting protections in place, set up a trust for home/assets, seeking out alternative living arrangements, etc). Including your children in this endeavor is important. They may or may not want the responsibilities that goes with being assigned DPOA or MPOA.
**Having easy access to medical information for both of you is another good bit of advice, as it would be difficult to know what is needed in an emergency. List of condition(s) and medication(s) should be provided and updated on a regular basis.
**Paying the one child who helps, even a minimal amount, could be of help to them, but as others have suggested, do this with clear instructions (caregiving agreement and make it official, perhaps with the EC attorney when you set up all the other documentation) about how much and for what, otherwise if you or your husband ever needs Medicaid, they WILL consider this a "gift" and will hold it against you (delays any Medicaid money.) During that family discussion, they may say they do not want to get paid. They *may* surprise you!
**You could also offer the others who are currently not helping as much the opportunity to help with pay, via this same caregiving agreement. Make the agreement generic enough to allow for payment to whoever helps, if that can be done, but specific enough to pass the Medicaid smell test (EC Atttorney!) However, remember that this is not always about getting paid to help - sometimes there just isn't enough time in the day to provide that help, or perhaps they do not really understand what help you need or do not feel qualified to provide it.
**Downsize if possible - as others have noted, doing this after the fact becomes a major task! Move to a smaller place or consider Independent Living.
For everyone and anyone who feels they are in this predicament:
There are many reasons to prepare all this ASAP, but as an example, my mother's cousin was taking care of her husband with dementia (and not really admitting there was an issue). She came up from FL with him briefly to handle her sister's affairs upon death. A year and a day later, she also passed, leaving him alone (and the execution of the will incomplete, which then fell onto ME!) Their son apparently took advantage of the situation, taking dad to the bank and withdrawing money, at least until someone at the bank turned him in.**(see note at the end of this post!!) The state stepped in and assigned a guardian. The details are slim, but presumably he was put in a nursing home and all assets (including their home, which would have been long ago paid for) were taken for his care. The son basically screwed himself as he was an only child and would have eventually inherited what was left. The money issue was bad enough, but who knows what he was or was not doing for his dad (taking him in, personal care, medications, etc?) Not many family members would take advantage of an elder like this, but having information as well as the "power" to handle someone's affairs is SO critical in a case like this. What would happen to your husband/wife if something happened to you tomorrow? What happens to you if he must go to a nursing home? Can you afford the cost? Would you lose your home? This is important in that if you prepare with an Elder Care attorney, at the very least a car, your home and half the assets would be protected, i.e. you get to keep them!
I am not presuming anything or passing judgment on this poster or anyone else, but it is hard to tell from what little you have stated. What kind of relationship have you kept with your three children after they 'flew the coop' but before dad's decline? Is it a two-way street where they enjoy visiting with you and having you come to visit, or do you wait for or expect them to come because you are there and/or need something? Do you attempt to visit but they are too busy? Our mother was happy to see us visit and/or help whenever. She helped us, we helped her. She visited, we visited. It might not have been on a regular basis, but we each took/gave what we could. For my former MIL even if we could make a weekly visit it was not sufficient - she EXPECTED us to just drop everything and come more often because that is what SHE wanted (and she needed no help at that time nor did she help us.)
Assuming that people today would not enjoy, or even tolerate, caring for their elders is ASSUMING a lot. Like in your case, our grandmother was cared for by her children's families - they took turns. She was not really a burden, she just needed a place to stay and to have someone meet her basic needs - food, clean clothes, a place to sleep, family gatherings, etc and our families provided that, taking turns. She was pleasant enough and although she had some medical issues, they were not really extensive. It was not really a huge burden and no one complained or suffered for it. Although some were still working, for many of the women back then it was part time or not a huge financial impact, so they had more time to give or could give up that job without a huge impact. Most of the children of these families were grown and on their own, so there were not many children involved. Most were also younger, less than retirement age. Many elders back in the day passed along much sooner/younger due to heart disease, cancer, diabetes, etc. Perhaps by the time they came to live with you there was no home to fix/clean/sell. Perhaps their personal items were limited, no need to do extensive clean out. Perhaps there was just their meager SS payment and simple Medicare to deal with and it was used to help offset their care.
Fast forward to today - many elders are living MUCH longer lives. By the time they need assistance, their children might be seniors themselves and have their own medical issues. Our mother just turned 94! Two of us ARE retirement age. Medical improvements have treated once terminal illnesses, allowing for longer life. Better living conditions have also contributed to longer life. Most younger families are now two-wage earners to survive in today's economy. Jobs are often lost making it difficult for families to survive never mind taking on the care and finances of another one or two people. Some elders now have one or more homes. Some of these have degraded over time and require extensive work. Some have collected YEARS worth of stuff, much of it is worthless (brother thought the Hummels would be worth something - HAHAHAHAHA!) Prepping and selling a home is not easy. I've done it once, did not plan to do it again, but now we have try to clean/fix/rent and then eventually sell mom's condo and most likely I will get the brunt of this work! In addition to Medicare, extra medical plans are often in place. Pensions (fast going the way of the Dodo) add to income and money managing. Multiple credit cards and/or bank accounts may be involved. The paperwork and phone calls alone are almost a full-time job! It is NOT an easy task to manage all that, much less what physical and personal help might be needed!!! It might seem simple without considering all that needs to be done, but trust me - IT ISN'T!
Enter dementia. This is fast becoming the biggest medical crisis. You are not alone. Unlike our grandmother, someone with more than initial stages of dementia CANNOT be left alone while everyone works. Because this progresses, unevenly and more quickly for some forms of it, at least one person must exit the workforce AND commit to eventual 24/7 care. This can last (and it becomes much worse over time) for YEARS! Not everyone is cut out for this task and some have their own conditions that prevent full time care like this. This is at best a difficult and often thankless job. At worst, it can cut the caregiver's life short. Because of many issues, sometimes providing care for elders is not possible - it isn't always just because they don't feel like you did. There are MANY postings just on this website from people who are feeling major guilt because they cannot or could not provide this care and had to place their loved one in a facility. There are others who are suffering from their own medical conditions, sometimes because they DID provide the care. Sometimes the home is not amenable to having a disabled person and it would be cost prohibitive to make modifications. Before our mom developed this, all I had ever heard of was Alzheimer's and the information was minimal. Now I know so much more. Needs increase over time - incontinence, mobility issues, paranoia or hallucinations, sun-downing... I could go on, but most everyone here understands all this!
We three did NOT make the decision lightly to place mom in a memory care place. One brother is still working, often crazy hours and would not be able to provide the full-time care she needs. He is currently living with a girlfriend (a recent addition to his life) and it should NOT be her job to take care of HIS mother! The other lives 1-2 days drive away (which means it would be difficult for us to give him a break once in a while) and although he "retired" he took on a full-time position and is also not able to care for her full-time. NEITHER of them fully understands the whole dementia thing, even though I have tried to share with them what I have learned. I really do not believe that they could care for her even if they were not working. They do not have the skill set. They were thinking 1) how easy and nice it was for our families to care for our Nana and 2) how awful nursing homes were (dad was in one for a while, and they CAN be awful; he should have been AL or MC but they were not as common at that time). I could not lift my grandmother when I was young (20) and stronger, and with a bad lower back now (spinal issue) I could never lift my mother. She outweighs me by at least 25-40 lbs! In addition, the place I bought is still undergoing repairs so it is not a safe place for her to live. Also full set of stairs MUST be traversed to get in/out and she has enough trouble walking and stepping off a curb. Stairs would be a big no-no. She often needs to be coaxed into social activities (it IS important) and other times must be redirected or refocused to get out of the need to go someplace (previous home, her mother's, walk to my place, etc.) To be honest, most of the non-personal care has fallen onto me. I do not ask for or take any money for doing this, but it does take a lot of my time. The paperwork alone is still an ongoing issue (2+ years). Handling other issues, like getting assigned as representative for pension, SS/Medicare, IRS and VA, as well as trying to close several charge cards we found tucked away, takes up too much of my time (and appears it will continue as after finally getting the pension paperwork approved, which took TWO years. They told me I will have to provide reports periodically to show that I am using her payment for her. Pension and SS fall about 4k LESS than the cost of the MC facility! I suspect SS will require the same.) All calls and dealings with the MC facility come to me. Most appointments fall on me (all but sometimes I get brother to drive as I have no A/C for nasty days.) Organizing (and providing some) clean out, clean up, packing and storing, as well as repairs on her condo also fall on me. It is better that I handle it the organization (but I cannot move bigger items), but I would like more time for myself!! If I added her personal care to that, I would have no time at all, possibly even NEGATIVE time!! ALL this DESPITE having set up the DPOA, medical directives, having already been on her primary account!! Getting THAT out of the way will be an huge help for future issues, but it does NOT take care of all the rest!!!
**** A few have mentioned this - please PLEASE get rid of things you no longer use!! Make needed repairs if you own your place!!! If you live in a large, rural area, consider selling and moving to a smaller place more accessible to your needs, especially if/when you can no longer drive, or an Independent Living place, which often has AL and MC associated with it so as dementia or infirmity progresses, you can transition. So far two days were lost to being at her condo for heating system delivery and the install (the system died.) Several windows need glass replaced (fogging up due to blown seals) as well as sink, faucets and possibly both toilets. Painting many rooms will be needed, and replacement of some of the shades (damaged or discolored.) These will all take up my time, just to make the place ready for rent or sale. Also, mom has enough clothes, shoes and handbags, as well as cosmetic jewelry, that we could open a store!!! I would not classify her as a hoarder, however, every closet (two bedroom condo has 3, one of which is walk-in plus two with shelves) AND 5 of those porta-closets (LARGE zippered organizers for clothes) are STUFFED FULL of clothes!!! Some may have been worn ONCE, if at all. I have found purses with plastic still on the zipper tabs, which means they were not used. This is NOT a fun task. It takes 3 hours just to drive to/from her place and I can only pack and do so much because of my back - basically any trip there ruins a whole day for me. It isn't a visit with her, but it does take away time that I *COULD* visit with her.
So, in summary, make a plan. Discuss all options and concerns with your children. Consider ALL options. I am not a religious person, but the old axiom 'God helps those who help themselves' certainly applies. You cannot assume ANYTHING, certainly not what others can or cannot do, will or will not do. You have to work on what YOU can handle and then see if or how they can assist. You need to prepare for any eventuality! Once again, we do NOT know what tomorrow has in store for us!!
**For those negative people who say do not do this personal/financial preparation as your representatives are just vultures waiting to pick you clean - don't bother replying. The number of people who take advantage of DPOA is minimal. There are WORSE people out there waiting to rip you off when you become incompetent. The state can rip you off as well, if not more! Choose someone you know you can trust, and have a backup or secondary person who can keep things honest if you must (there should be at least a secondary anyway, in case the primary cannot or will not continue to perform those duties.) Relying on "going digital" is not just ridiculous without some oversight, it can be disastrous!
Which is why i don't understand my parents and Inlaws who did not slave for parents but expect us to slave.
My stepmom is aging with grace - which is what i would like to do.
Thanks for the smile for today💜
Do all you can to support yourself, accept limited offers of help, and say thank you and be pleasant. You might be surprised that your children make time to help you.
But in her bid to not be a burden on us, she allowed herself to get very ill with sepsis among other things. She might even be alive today still, maybe not dancing jigs but still with us.
I think pre-apologizing for things that may or may not happen is almost like setting yourself up for failure. Its like if you could do something to alter the past you end up upsetting the whole balance of your future and everyone else's. I think if your children already know that you don't want to be a burden that doesn't necessarily mean that you won't still end up being a burden and that they won't still resent you for it. It really depends on what they are made of right?
I think you need to set yourself up as much as you can now so you as well as your children will be prepared for what is to come and even if you do that there is no predicting how and when the sh*t will hit the fan tomorrow or ten years from now.
You almost sound like my parents' did years ago.
I agree with WhirledTravel; please don't apologize. Second; I wouldn't assume young people of today won't rise to the challenge. Give us 'children' time to adjust and we usually will either surprise you or fail the challenge. I'm aware of all the daughter - guilt (or child guilt ) that is supposed to make us feel an obligation toward our parents - I just want to be clear that I have no guilt in caring for them. Some of us don't feel guilty at all (deprived of sleep, coffeeless...which is a bad place for me to be since my coffee needs to be in the form of an IV attached to my veins.... and possibly grouchy....but I'm hardly feeling guilty...) Nor have they expected us to take care of them...which nearly started an argument.....and as a former member of the banking industry, you'd be surprised how the "I didn't want you to worry about me/I can take care of yourself" has created epic arguments...
Each family is different but for those that want to help, please let them.
Coming off caring for my mother (Alzheimer's) and my father (who is recovering from major surgery at this time), I can't think why you would feel an apology (or even a pre-apology) would be in order for something that is not in your control.
My mother is now 75 and my father 79;so I am not assuming the young people of today are as young as its being inferred. There are situations in caregiving that if I thought about the role reversal of what I'm doing for my parents, it could possibly scar me forever. But I'm speaking from the other side of the table; your 3 grown children may not truly agree with your assessment of what they are likely to do.
In personal experience, not even my parents anticipated how much effort the 3 of us collectively did to make what their caregiving looks like today.
Do I get exhausted as a caregiver? Yes; it's not wine and roses 24/7. Do I regret pitching in? Absolutely not; I or my siblings, the "children' in the family. Yes, our lives are fixed and we are neck deep in obligations, but the one thing that does remain stubbornly clear is that the romance of youth and the ignorance about our mortality will die under the harsher realities of age and experience. We know it; and we don't like it any more than you do.
Our goal, (an adult "child")'s goal is to help a parent manage their independence for as long as possible (even if it's not truly independent.)
We all have to process mortality, and why WhirledTravel gave you great advice: "Just thank your kids for what they do for you, don't guilt the ones who don't/can't/won't help, and appreciate the one or ones who do. " Not everyone can rise to the challenge of caregiving, but no one can help at all if you shut important people out of the process we all have to face when we age.
I'm not here to take over my parents' life: i'm here to support it as best I can. If never given the opportunity, you may never know, but apologies aren't needed. Not even pre-apologies.
My mother is 95 with memory loss [and dementia] something she never wanted. and so never really planned for
I dont encourage my children to go see her, as she [and my father] really had little to do with any of their grandchildren when able. and its NOT their granny really.
I have for my children's sake, paid for my funeral, finally organised the POA and ePOA and will in the very near future on the eve of my 70th, write up the care of all the little things I need to do to keep my body moving [ Ive a complex medical history] and that letter will go in to the lawyers so if the ePOA has to be triggered off he can hand that to my children. I will also have a letter to be given on my death. and that will contain the apologies for not being the best .
Yes I have pre apologised, and my Ma in her lucid moments is worried she is causing us problems . And I have told my daughter to ignore my protestations if I need to be shut away, then shut me away and please dont visit. I am not going to blackmail her to caring for me when she has no medical app in her gene [despite being the daughter of a Dr and nurse]
To me when I hear my peers saying they don't want to go into an institution for care, well that really isn't our right to choose. Making children 'suffer' isn't right.
That isn't saying if a daughter/son/ DIL wants to, then they, are the ones to decide if they can manage.
I dont want to live to 95 but not have been independent for the past 10yrs!! So organising for the worst scenario is important
Check this link out. It's an active one now on AgingCare. It might give you an idea of things you can proactively do to help yourself and your children when needed.
https://www.agingcare.com/questions/information-gathering-as-a-caregiver-is-there-a-list-of-information-i-should-have-on-hand-for-my-fils-care-432846.htm
perhaps it is not that we don't care for our aging parents as they did theirs? rather it may have to do with our [baby boomers'] parents being in decline. longer. thru meds; which keep many physical issues at bay, but cannot control the mental decline.
this is what so very many of us could never have predicted - we never observed our parents ever having dealt with this when their parents were aging - and we find we are suddenly faced with a longer term of caregiving our parents, who never had to experience it with theirs.
i keep my son apprised of the strange behaviors of my mom with dementia, so that he is not unaware of this concept - altho i do not want to burden him with it of course. we in our 60's will hopefully make preparations for our elder years so we do not burden our children.
One day he said it bothered him that it all seemed to fall on my shoulders. I just reminded him that my sisters both worked and I was already home. It does make a difference.
Not every person is designed to be a caregiver - I certainly never knew that I was, although I often said that my mother raised me to be her caregiver when the time came. She was the first to pass and I cared for my dad another 7.5 years but it was more assisting than caregiving. Now I am full-time caregiver for my husband.
I was also going to say, don't apologize. However, do explain your needs and do try to get all your affairs in order.
73 & 75 aren't really "old" by today's standards. But if your health-needs make you dependent on another, then you do need to have everything as straight as possible.
Start with a listing of all medications and when they are taken - and why they are needed.
When I stepped in as assistant for my dad, I had to learn everything on my own - my mother had done so much of the work that Pop just didn't know much about his own self. He had been sicker than any of us realized, starting with his heart and ending with his knees. But during the first year we took care of everything and made him as healthy as possible. He was even able to go back to baking. (Master Pastry Chef.)
Aside from my in laws buying burial plots years ago, they did NOTHING to prepare for the late years of their lives.
My husband and I spent weeks and weeks going through their house that was filled (to the ceiling in some rooms) with hoarded crap. I could go on and on about this one element alone but that’s another post.
After clearing out we were faced with a home that was in such disrepair it took us nearly six months to fix what was wrong.
All of this in addition to appointments to get both parents back on track with the proper medications, and to set up occupational therapy.
My husband also was able to take control of their legal matters but that too took time to set up.
Using our experience as an example can help motivate you to do what you can do now to help your children out in the years to come so when you do need more assistance it will make it easier for them to step in and do just that, take care of you!
THIS!! Exactly. I do understand that Dad has good days and bad days, and he has dementia, but sometimes I wish he would take an interest in anything, or anyone, besides himself. It's kind of sad, because he used to be very social. I also remember my grandmother, whom I loved dearly, but when I called her to chat, the only thing she ever talked about was her arthritis and ailments. It got old quickly, and it's hard to hear only about that stuff.
Make sure you have the important financial and legal papers in place - update documents at least every five years. Power of Attorneys Financial and Durable, Advance Directives, Wills.
Make sure you have copies of a will in at least 2 places - preferably one with the executor and one in a safe deposit box or other offsite location. One flood at my house and I was grateful we had set up backup provisions.
If you have insurance policies, make sure to update the beneficiaries and keep a list of policies, numbers, and the phone numbers to call. My best friend's mother had a 50 year old policy that was fully paid up - only $1000 but it will cover my friend's mother's cremation if need be. And it might have caused problems with Medicaid application if unknown and undisclosed later.
If you have a DNR, make sure that you have multiple copies and it is EASILY found. My stepmother didn't have my father's handy when he coded in their living room, and the EMT's could easily have ignored her verbal advise. He was in stage 4 colon cancer, and he would NOT have wanted to be revived.
Caringbridge is great idea, but if you don't want it..Please, please, please make a list of your doctors, your medications, and your medical conditions being treated past and present. If your family has NO idea of your current requirements, they are making decisions in a vacuum if there is an issue. My husband and his brother had no idea that they had been exposed to hepatitis due to parent's having the disease until a routine blood test showed antibodies. Fortunately, neither son contracted the disease but HAVING NO CLUE? As blood donors both sons were exposing who knows how many others? With family history, you can narrow down diagnosis with odd diseases. My BIL's lymphoma was more quickly diagnosed when family history was known after being hidden for years.
And if you ask for help, volunteer to pay for gas if you can. Plane tickets. Hotel rooms. Arrange for housekeeping or meals on wheels if you can manage on your own to apply.
Yes! Please acknowledge the one who helps with more than just a thank you!
If you would like to share with them how much you love them and you'd like to do this before you're unable to I suggest writing them each a letter. Not an email but a letter on paper. Tell the adult child who helps you the most where to find those letters or mail them off yourself but don't mention anything about them helping you and your husband as time goes on. Don't apologize to them in advance because you don't know that they will help you. If I had received a letter from my mom apologizing to me in advance for helping her as she aged I would have thought it was a manipulative ploy to play on my guilt and I wouldn't have liked or appreciated it.
Hold off on the apologies for now.
With respect to the two children who don't help as much, I would suggest asking them outright if they don't volunteer. Don't leave that job to the one helpful child, and don't put everything on that one just because they're easier to deal with. Reluctant helpers may respond a lot better to direct requests from their parents than pressure or guilt from the sibling. And the helpful child will bless you for it.
Apologizing - I'd love just once to hear my mother say "I'm sorry to put you in this position. I wish I had done things differently." Maybe not every day but at least once in a while. And yes, appreciation helps too. Lead with that, certainly.
I hear that you enjoyed caring for your parents when the time came, but in past generation, the time usually came and went fairly quickly. Not any more. Both you and your husband are rather young and might live another few decades. Your kids could get to be your age and have similar health conditions to what you have now and still be tending to you and Dad. You can imagine that could be a strain.
About needing help. Now is the time to downsize, if you haven't already. Move to the lowest-maintenance property you can find and afford, and the closest to services such as groceries and medical. Too many elderly need extensive help simply because they insist on living in homes they can't maintain, that are too far from the services they need, when they can no longer drive, mow the lawn, clean the house, or climb the stairs. Bite the bullet and do as much as you can to spare your kids unnecessary labor and aggravation.
Finally, give back. Remember your kids' birthdays, and your grandkids'. Ask them about their day, when you see them. Take an interest in their lives. Be a support and a sounding board. Too many parents grow to think it's all about them and forget that their children are people with their own lives who are taking away from those lives to care for them. Don't make that mistake. That more than anything else is what makes caregiving a burden for so many adult children.