I have been caring for my mom for the last 4 years. My sister gave me 6 weeks of respite a year. Now she is narrowing the respite down to 1 month a year. I live in Florida, she lives in Massachusetts (where mom and I both lived). We have one other sibling who is mentally unstable. I am feeling overwhelmed and feel like I am not able to live my own life anymore. I am afraid she will get to the point where she will not give me any respite. Is it wrong to move my mom into assisted living and ask my sister to help pay for it since my mom’s income is poverty level? We are both retired and financially stable.
It's not wrong to move your mom elsewhere. If your sister if not filthy rich, asking her to help pay could be wrong.
If your mom is still doing well enough to not be in need of the services of a nursing home, then consider hiring someone, with her money, to help out. Could be someone to clean the house. Someone to cook or do errands. Someone to stay with mom for 4 hours so you can get out and do something with other adults.
When you need a break, you can usually work with a nursing home to schedule respite care for a week or two so you can go on vacation or just be in your own home alone for the time so you can rest, relax and recharge your batteries.
When the time comes that she needs more help, you may need to put her in a facility that accepts medicaid. My MIL is in one (at 95 yo!) and it is nice and she is happy.
In the interim can she afford to pay for an aid to come in for 1 day a week or a few hours/a few days a week to give you a break? Or what about adult day care? If you're going to pay for something on her behalf (which is noble but not recommended) then I would start with this since it's more affordable and you'll get an immediate benefit.
If your sister doesn't like her mom spending money on this then you will explain to her that you need more of a break, not less. If she doesn't like it then she can be the full-time caregiver. The hard truth is that no one is obligated to provide hands-on care for another or to pay for such care. And no one should ever be "assumed" into doing it (or guilted, pressured, shamed, threatened, etc). Your sister has no moral or ethical obligation to do it and neither do you.
Hopefully one of you is your mom's DPoA. If not this needs to happen post haste if she has her faculties. If not, you can still take her to an elder law/estate planning attorney to help her get DPoA in place -- the attorney will interview her privately to assess if she can comprehend what she is doing so let the attorney decide if she's able, not you; then get her a doc appointment for a baseline cognitive/memory exam to have in her medical file; finally, maybe even consult with a Medicaid Planner to confirm she would actually qualify and if so, what it would take and when. Don't assume she will or won't.
I wish you success in getting your care schedule down to a manageable one for you both.
Your sister should help in other ways to give you more respite. You can hire help that she pays for.
Also, what areas are most taxing? Dressing? Toileting? Entertainment? Medications? Food prep? Is she argumentative? Try tackling one at a time.
Caregiving is very hard and most feel overwhelmed and that their own life has disappeared. It can become so arduous that your own health is compromised. It is never wrong to acknowledge your feelings. Only then can you look at solutions that can improve your life.
Why is your sister decreasing the amount of respite she provides? I suspect it is because your mother is becoming harder to care for. Did you end up doing the caregiving because you are a retired nurse? Were you pressured into doing it?
From your profile: "I am caring for my mother Jo-Ann, who is 81 years old, living in my home with age-related decline, anxiety, arthritis, depression, mobility problems, and osteoporosis." I don't think your sister will agree to fund the cost of an AL facility with you. What do you do for your mother on a daily basis? Do you see her as qualifying for a NH?
Who is her POA/HCPOA? What is her financial situation?
needed !!! She’s just as able to help
mom as you… decide what’s best for all .. especially for you and go ahead
otherwise be prepared to do it all !!!
On another note, it is so easy to get aggravated with our siblings when they don't help the way we think they should. Some may be selfish, yes. Others have complications in their lives that we simply aren't aware of. Unless we spent an extended time with that sibling, we will miss the difficulty they have.
I made the error of not understanding the stresses my sibling was under and ascribed selfish and wanton motives. That was not the case. They were overwhelmed by many factors in their life and lacked the resilience to deal with an avalanche of struggles.
Might I suggest that you help your mom apply for Medicaid. Then, help her to get placed into an assisted living facility that will take Medicaid.
While you are helping mom get Medicaid, you might consider placing her into an Adult Day Care which will care for your mom Monday through Friday during the daytime. This will give you a break most days of the week and cost less than assisted living.
I doubt she will offer any payment at all towards it.
Juse know that all Nursing Homes are understaffed and absolutely Awful to live in!
Juse Google it and read about it.
What you should do is let your sister know that you need help and if mom is going to continue living with you that you will need her to pay for Caregiver twice a week and continue with her 6 week a year Respite Help.
Just because you took on the role of caregiver in the beginning doesn't mean it's a life sentence if you change your mind. As your Mom ages, her needs will increase, you will get older and have more limitations also. I suggest that you have a frank discussion with your sister about needing more help with Mom, and the toll it is taking on you. Since she has lowered her respite time, she surely will understand this. This does not mean she will be able to pay for NH care or want to; but will lead the way to discuss other solutions such as a private local aide to come in and spend a few hours with your mom each day. This will give you some very much needed and deserved respite time until the time comes when keeping her home is no longer an option. Best of luck to you!
Explain to your sister that moms needs are increasing and ask if she can provide financially to an AL if you found one that will be a good fit for mom. I think it is better to have these discussions soon - giving you the answers needed so you can start to find what will also help you going forward.
I am also in Florida and from Mass. I have a sister who has come once in 2 years. I am full care for my mom and my sister honestly is not invested in being any part of moms care decisions. It is better to know what your sister is willing to be a part of now so you can begin the grueling process of getting both you and moms needs met. You are also allowed live and at least having this conversation now will allow you to decide if AL is a good fit (and affordable) or if you want to look at in home help or even Adult daycare - if she isn’t willing to give enough then at least you can move to step two - maybe meet with a elder law Medicaid attorney to get your moms Medicaid application started (though I have seen some here say that with no assets they have filled it out themselves).
Just don’t wait for your sister to ask about moms or your needs. Most family have no idea what this really is day one and day out - you will need to have the conversations to get the answers - even if they are the answers you do not want - at least you will be able to then move forward.
After moms stroke my sister did come for a few trips in early 2019 and then she did nothing and made no attempt to be part of or learn about any of moms continuing care or needs. It took me awhile to accept she wasn’t coming and to stop watching the front door and to just start making decisions as if it were just us. It will be better if you ask your sister now so that then you can move forward - she may very well be willing to help with expenses and that may be a huge help and relief for you - so don’t wait - reach out to her - I’m wishing and hoping the best for you and your decisions ahead.
Why has sis shortened the respite period by about 2 weeks? Why were you doing the majority of the care for mom? What has changed - aside from sis shortening time she will spend with mom?
Things you and sis can discuss would be:
1-More equality in how to care for mom. Are you both able/willing to contribute equally to mom's care at assisted living (or appropriate level of care facility)?
2-If sis has cut the respite time by 2 weeks, can she pay for 24/7 in home care so you continue to get the same 6 weeks as before?
3-To sis: Repeat your own words - I am feeling overwhelmed and feel like I am not able to live my own life anymore. I am afraid she will get to the point where she will not give me any respite. - Then ask her what can be done so you can have a life and, at least, similar personal time that she has.
Its loving on your sister's part to try to help. But situations change and people's needs do, too. Appreciate what she does and find other things she can do to help long-distance that will bring you relief.
For example, if your sister can't come the full 6 weeks, can she pay for two weeks (your choice of when) for a part-time or full-time caretaker to come in to relieve you? Same with your unstable sister. Perhaps she can pay for some in-home care to give you relief even if she can't or shouldn't actually come in and take care of your mom.
If your sister is unwilling or unable to fork over the cost of having a caretaker full time for two weeks, perhaps she can pay for you to have a housecleaner come in a couple of times per month, do the shopping for your mother's needs and have those things delivered to you, order supper online for you once a week or have you and your mother travel to her home where she will take over for a week or two while you turn it into a vacation for you. Or, hand the bill-paying for your mom's care over to her. Look for things she can do to assist you long-distance.
Whatever you do, don't feel guilty for asking for help. Caretaking, even if its your beloved family member, is a really tough job. It can be physically and/or emotionally draining and exhausting. Most long-term caretakers suffer from burn-out and it can affect relationships, physical health and your sense of we'll-being. You do need support.
You're smart to be thinking ahead on how you're going to manage your mom's caretaking. Its best not to wait until the last minute when the situation becomes critical. Kudos to you for planning before that happens! And kudos to your sister for helping. She probably wants to keep helping but may have issues that have arisen which are interfering with her ability to do what she has been doing so far. Work together to find ways she can assist you and show appreciation for what she does. This is a team project which requires good communication and personal sacrifice on the part of the whole family. Still, there are limits to what any of you can do. Talk about those limits as a family and recognize that they exist for each of you and that you need to dignify each other and yourself by working within those limits.
Don't buy trouble. If your sister is helping now, appreciate that and behave as though she's going to continue to do so. It may be that she just needs a different set of responsibilities that fit with her current situation. Meanwhile, don't put a guilt trip on yourself or her. If she feels she's disappointing you or that you have expectations she can't fulfill, she may stop coming to help at all. Look for ways you can solve this together.
It may not be your cup of tea, but one way I receive support personally is through prayer which can bring peace of mind: "Do not be anxious over anything but in everything by prayer and supplication along with thanksgiving, let your petitions be made known to God and the peace of God that surpasses all understanding will guard your hearts and your mental powers by means of Jesus Christ." (Philippians 4:6-8)
It doesn't solve the practical side of things but the peace of mind and calm it can bring will make it easier to face the day to day stresses you are experiencing. And sometimes, while praying, wonderful ideas may come to mind which can help you manage a particular problem.
You can ask your sister if she can afford to help pay for AL for your mom, but you should also ask yourself if YOU can afford it? If not, there's always Medicaid to apply for on your mom's behalf for Skilled Nursing placement. Or perhaps you can finance her stay in AL for a while and then apply for Medicaid; speak to your sister and see if the two of you can come up with a plan of action moving forward.
Wishing you the best of luck taking care of YOURSELF as well as your mom.