No aides available due to shortage. I have asked my three adult children and my husband's sister and her son who is 32 just to get a one hour a week to help with my husband do some PT / OT just so I can get out take a walk, get some peace of mind. Then they wonder why I’m exhausted, tired and cranky, because I’m doing everything myself 24/7. Has anyone else experienced this? We had an aide for a while but in the pandemic and her being able to get paid at home there’s a shortage of aides. They live close by but seems like they only want me to babysit their kids. I have five in total and driving to school be there for them but doesn’t seem like they’re there for me.

Sadly, being dependent on family just doesn't work. For many family doesn't even live nearby. For others it is time to accept that our children do grow up, move on, and become pre-occupied with their own lives and caring for their own families. The more sad we are, the more overwhelmed and overwrought, the less pleasant we are to be around, and the more avoided. It may be time to accept that you are now stuck with the care you can afford to pay, and when you are not able to you may need to consider placement options. I am so sorry for this. There is no real answer given that you have already expressed your needs, and there has been no response. I wish you and your husband there very best. As to babysitting the children, it is time for a nice family sit down and your explaining to them that you, sadly, are not able to do this anymore. Tell them that you love the grandchildren, and have so enjoyed being with them, but that you have too much to do now. They won't understand. Until we have actually put on the shoes of another it is impossible to imagine where they are at. So don't expect understanding. Given that your children are already a bit self-absorbed, they will be a bit angry, perhaps. They will get over it and learn, as you must, to be more self sufficient without your help.
Helpful Answer (13)
Reply to AlvaDeer
Riverdale Oct 7, 2021
I could never rely on my mother to help with my 3 children as they were growing up. She had too many periods of illness or avoiding joint replacement surgery which she eventually had when she could no longer walk. My late MIL who was 20 years older and died in 1999 was much more of a hands on source of help.
Quit babysitting your children's kids. Yes, I know they are your "grandkids" but it's not like this giant ad where every moment is a Hallmark one. You aren't available anymore if they're not for Dad.
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Reply to PeggySue2020

If you are not able to find any outside help, then it may be time to be looking at placing your husband in the appropriate facility, where he will receive the 24/7 care he needs, and you can get the rest you need, and get back to just being his wife and advocate and not his caregiver.
And if the funds are not there to do that then you will have to apply for Medicaid to help you. You can see an Elder Attorney, and they will walk you through what needs to be done.
Now as far as you being available to babysit your grandchildren, you're going to have to learn to say no, and understand that the word no is a complete sentence. You have way too much on your plate right now, you don't need to be spreading yourself so thin. That is something you have control over. so make sure you are exercising that control.
If your family would have wanted to help you, they would have already, so now it's up to you, to do not only what is best for your husband, but also what's best for you. You don't want to be in the statistics where 40% of caregivers dealing with someone with Alzheimer's/dementia die from stress related disorders before the one being cared for do you? If that doesn't scare you into making some changes, I don't know what will.
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Reply to funkygrandma59

If they don’t want to help, you can’t make them. But say no when asked to babysit, don’t drive for school.
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Reply to Bridger46164

I'm sorry you're struggling with care for your husband.

You say in your profile that you have been his primary/only caregiver going on 2 years this coming December; you list one of his issues as dementia/ALZ.

So I am going to ask you, what is your long-term care plan? When you ask your kids for help, have they expressed to you that they think it's time to place your husband into a facility where he can get the 24/7 care he needs?

I ask you this because that's what happened to my nephew's wife in regards to her dad, who suffers from ALZ. Her mom steadfastly refused to place her dad, insisting she could care for him with "a little help". Well, a little help became their daughter (closest living child) "on call" 24/7 as dad became more and more unstable. Mom couldn't/wouldn't acknowledge it; like many of us entrenched in caregiving, the slide was subtle enough to not really notice it day-by-day. But my nephew's wife was expected to be able to drop everything at a moment's notice, even while working full time and raising her newborn child, because dad didn't want to go into a facility, and mom didn't want to place him.

She, eventually, had to start to refuse to jump at every phone call emergency; she had to not answer her phone; she had to make herself unavailable; because otherwise, the untenable situation of her dad at home would have continued to the detriment of both her mom and her dad. It was a terrible situation she found herself in, but it was necessary for her to back away from helping; without the extra hands, her mom was "forced" to place dad, where he is now safely and mostly happily ensconced in a memory care facility, and her mom can visit and spend time with her dad, without the horrific stress of being a full-time 24/7 caregiver.

So again, I ask, have you used your children in the past to the point, that they think, and have expressed for both you and your husband's sakes, that he should be placed in an appropriate MC facility? Because if they have expressed this to you, and you have insisted you can take care of your husband with "a little help", that might very well be why they are reluctant to give you any more assistance.

I hope you can get some help for yourself very soon, be it in the home or in a memory care unit.
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Reply to notgoodenough

I hope this doesn't like a lecture, b/c it's not.  It's from insight over years.

If family aren't helping, and aren't inclined to do so, it's time to make plans w/o anticipating or relying on that help.    You may have to reach deeper into possibilities for care, but your goal would be to find workable solutions that can be implemented.   

It's unfortunate that families can display such reluctance if not disdain for helping, but as many others wrote, you need to adopt that standard toward them as well.  They need to learn to grow up and be responsible for their own families.

I hope you can find a way to come to terms with the situation, and move on, letting the nonparticipants work out their own solutions.
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Reply to GardenArtist

I get your pain!!…...really I do..This am I am sitting here after a 5 hr day with my mom yesterday. 5 hours of wants, needs, physical complaints and mildly confused conversation. I spend about 24 hrs a week with her. I take her out of her assisted living three times a week to give her a change of atmosphere. My emotions and brain are worn out in just that amount of time. Doing this 24/7 would be impossible to me. I do not know how anyone can do this day in and day out. I feel the constant sadness, and the ups and down of emotion. I often feel like driving away and hiding out. Mom is like a child who you can not abandon. I can not walk away. My brother visits 1 hour a week total and 2 calls week {30 min}. He feels that is adequate. Mom can do a “public” self with him. She talks about shallow things and does ok with the surfacy chatter…activities , weather and the food. She saves her neediness and constant medical complaints for me. She wants me to fix her life, her body and her brain issues. I do not know what the answer is. I do know no-one can understand how rough this is unless they get in the trenches! I have done helps somewhat. Good Luck!
Helpful Answer (8)
Reply to Sadinroanokeva

wow - I would make it really clear to them why you seem exhausted, tired and cranky - it's because you're spread too thin and aren't receiving any help/support. And if they cannot help in any way, I would completely stop babysitting, driving to school - nothing! You don't need to chauffeur their kids around or even babysit - even if you enjoy it - maybe they need to experience how it feels to just rely on themselves - it seems they know how to take enough when they need it.

I would suggest your learning from them in how to say No! And now with not having to drive their kids and babysit, you've carved out that time for yourself - that's at least a start! You can take a walk, get a manicure...take care of yourself.
Wishing you all the best.
Helpful Answer (7)
Reply to Hopeforhelp22

You live on Long Island! Call around to the agencies and hire help. Go to Care if necessary, and start looking into who you can hire to come help you. Stop relying on family to relieve you. Look into daycare in your area as well where you can drop DH off on a daily basis if you're anti-Memory Care placement. I am an only child have nobody but myself to rely on for the care and management of my mother. She lives in Memory Care Assisted Living but there is still a lot to do, although nowhere near the 24/7 hands on care you are faced with, that much is certain. I don't ask my children to help me out in any way, but to just call their grandmother and go visit her as their schedules permit.

As far as your children relying on you to babysit their kids go, I'd tell them to look for babysitters, that you have your hands full with the care and management of their father! You only have 2 hands and one mind, and right now, it's full to the brim and then some. Respect is a two way street, kiddies, and if they expect it themselves, then they need to be there to give it to YOU in return.

That said, it can be very difficult for 'children' of parents with dementia/ALZ to witness seeing the condition in their parent. I know that's the case for me; it is literally tearing me up inside to see my mother in the condition she's in with advanced dementia, making me not want to visit her. I still do visit her, b/c there's nobody else to do it, but it gives me a stomach ache every single time I go over there. Just a heads' up from the other side of the street to give you an idea of what THEY might be going through watching the decline of their father.

Wishing you the best of luck with a difficult situation and finding respite care for YOUR sake. Your DH is not the only person who's life is important here; your life is equally important!! Please be sure to find help, for your health and wellbeing!
Helpful Answer (7)
Reply to lealonnie1
lealonnie1 Oct 11, 2021
*That should say Care com*
I have learned that the only behavior I can change is my own. I have to be clear in my communication while keeping my expectations of others low. Of course, it would be lovely if people saw the work we do and wanted to assist, but that’s not realistic. People have their own lives and, just because they are family, doesn’t mean we can automatically rely on them. If we haven’t communicated our specific needs (or give vague cues of exhaustion), it’s probably not going to result in helpful behavior from others. I had to stop over-giving, learn to quit being a door mat and work on clearer boundaries. People were used to me doing it all (and being codependent). I decided I didn’t want to be an unhappy martyr so I read a lot (Brene Brown is an excellent guide)and began empowering myself. Perhaps setting limits on caring for your grandkids could be a beginning. Start with a list and see what you can cut out or shift a bit. For example, I started asking people to bring a dish for a family meal (or ordered take out) since family didn’t offer to help. I hired a housekeeper and I book a monthly massage. Sometimes I use meal kits when I’m too tired to cook. You could have a family meeting and ask if there is a specific time you can book them for a couple hours and, if they say “I’m busy,” you’ll know their stance. You can continue to look for outside help and maybe get creative about it. For example, you could have a friend come by the house while you go take a walk. I paid a friend to come stay so I could take a class. It helped her and it helped me. I begin my day with 5 min of calming breath/meditation and it sets the tone for my mood. I use the CALM app. I watched my mother wear herself out (to an early grave) over my father’s care and I will not do the same with my life. She told me to care for myself and I am. I wish you strength to give yourself the same kindness you give to others. Small steps can lead to bigger solutions.
Helpful Answer (6)
Reply to Tulips
Maple3044 Oct 11, 2021
What a brilliant well stated comment. Once one accepts that one can not change others' behaviors, or feelings; all one can do is change one's behaviors and feelings - life becomes simpler. Hugs to you for your thoughtfulness.
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