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?
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.
Thanks for the smile for today💜
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.
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!