Where to turn, when there's nowhere to turn?

Melissakay: You have come to the right place in reaching out to this wonderful forum comprised in part with trusted active and past caregivers. It is IMPERATIVE that you include your siblings in your caregiving for BOTH your parents, else you become easily fatigued or ill. You also should rethink your decision to cut your social life since, most definitely, you will need some 'me' time. It is doubly hard caring for both parents.

I would suggest contacting Alzheimer’s Association or the Council on Aging in your area. They will be able to help you find a Caretakers meeting . My man’s decline started in 2016. It took 3 years for me to understand that “I” needed help . I was worn out and ANGRY . I felt guilty because I was snapping at him all the time . At my first meeting I learned about the Broken Brain and how the behavior ( I was watching ) was not directed at me , to hurt me, but it had to do with what was going on in his brain . My Caretaker meeting have saved my sanity . We are in the moderate/advanced stages and it is so much easier now than it was all those years ago. When the pandemic hit we starting meeting on Zoom and still do . I have given up quite a few things that I used to do and now have help in on a regular basis so I can get out a little . I am blessed with friends that know the both of us and spend time at our house . You are not alone and there is help out there, you just have to make the first steps . I am alone with this . There is no family around . I know what the future will bring and with the information I have gained , I am preparing for what will come next . I am doing the best I can with what I have to work with. My prayers are with you .

Dementia is a devastating disease, and you are being very responsible and thoughtful to take the whole burden on yourself. Connect with a local social worker to find out if you are getting all of the benefits your mother and you as a family caregiver are entitled to, including access to counseling if you think it would help. Also connect with local caregiver groups so that you can share experiences and get advice. There's a lot to learn about dementia, and all of its stages and ways that it can manifest. At some point you may need to have a nurse come in to show you how to handle transfers, turning people in bed, giving dry shampoos and cleaning people in bed. You'll need advice about equipment and supplies that are useful to have on hand. Remember that dementia is likely to get worse. Hopefully it will never happen, but it's good to have a plan for a time when things may be too much for you to do alone. All the best to you and your family!

Sounds like it's time to meet with a Geriatric Psychiatrist and then schedule a group meeting where he/she can educate, mediate and medicate (where it is appropriate.). You are not alone, we will keep the lights on for you. :)

I'll echo what others have put in here plus add a few of my own.

We, as a forum, are happy to allow you to express your feelings. Also, you are welcome to contribute. Just don't be mean or condescending about it. However, using a forum like this to vent, means that you could get unwanted advice and criticism, so beware. As I told my friend about all the political e-mail that I get..."just keep scrolling, scrolling, scrolling.." (like Dory's "just keep swimming, swimming, swimming." in Finding Nemo)

Definitely do not give up your social life. Just re-direct your social life. For instance, finding a support group is a good thing. Talking to others about something not related to caregiving is a good thing. Volunteering at a church or food bank or at a social agency is a good thing. Paying for self defense classes or taking karate/akido is a good thing. For me, the more different things I had, the more I could deal with the frustration of care giving because my mind could move from one area to another, to provide a little bit of relief from the never ending frustration of care giving (Caregiving is not easy for me.)

If you can, find some professional therapy. They could introduce you to new ideas you could use when giving care to your parents. For instance, she provided a "Intensity of Feeling Chart" that helps me to deal/rationalize my emotions.

Talk to your siblings, if you are on good terms with them. First, figure out what role you would like them to play. Then ask yourself whether that role is something they could do. My sister is the catastrophic thinker. Because she thinks the way she does, she gives me ideas on what to research. Share funny stories. Ask them questions about the past. It helps them to feel connected to your situation and you might learn something that they discovered, about your parents too! However, be cognizant of their time. You don't want to be the phone call or email that they ignore.

For me, typing on the computer, better known as journaling, helps relieve me of the burden of my thoughts. As I type, I read. As I read, I review my situation, As I review the situation, I come up with things I haven't thought of or actions that I need to take. I have one document on my computer where I wrote a letter to my Mom, thanking her for giving me this time with her as I accompany her on her journey with dementia. I tear up every time I read it, and I'm tearing up now as I type in this forum.

Mindfulness and meditation are great so that you can temporarily acknowledge and rein in the emotions that you are feeling at that point.

Get on some public zoom calls. I'm on the list for some banks and hospitals and financial institutions. Think of it as continuing education. Lots of banks have classes on wills and trusts. Many hospitals have one hour lectures on various medical topics, including Parkinsons, Heart Disease, Diabetes, Knee surgery, etc. These are useful so that as different medical and financial situations come up, you will already have some basic knowledge and can come up to speed on your specfic situation faster.

The idea is to keep your mind open to any and all opportunities. The more informed you are, potentially the easier time you will have in making decisions related to your parents care and the less fear and frustration you will have, as you forge your forward path.

Not understanding why you don't want to bother your siblings. You aren't making them aware of the decline? Or that you need a break? They should always be in the loop. Parents belong to all the kids. If you don't ask for help, you certainly won't get any. Yes, some sibs will out and out refuse, but doesn't sound like they've done that yet. Inform and ask.

You NEED to share with your siblings what is going on.
If they are totally unaware of the situation and how the decline is then when it gets to the point where you can no longer care for her by yourself or at home they will be completely blindsided and will not have a clue as to why "all of a sudden" you either need help or you can't do this.
This is their mom as well and they need to take this journey with you
Ask for their help.
Ask if they will take a weekend and stay with mom while you get out.
Ask if they can come by so you can get to the grocery store.
The ore time they spend the more they will realize when things get difficult that you are not exaggerating when you say you need help.

But you DO have somewhere to turn. You have siblings to whom you might share your struggles if you choose to. I would encourage speaking with them, if they can't help you with your parents, maybe they can help you by listening. It's the fortunate person who has family who can listen. Maybe your siblings can be your space. If they can't be your space maybe a therapist can be a place to bounce your frustrations and care (I don't anticipate that many therapists will have first-hand experience in full-time caregiving for a parents either because of their ages or willingness to use a facility). Trust me, as someone with neither siblings nor SO, it can be worse.

I continue to be puzzled by so many blithe “oh, just put them in a facility” responses. Well, YEAH, duh, obviously, that would be just utterly dandy, if not, oh gee, for the $5,000-$10,000 per month cost. What if these parents don’t have that kind of swag, but have juuuuuuust too much money for Medicaid qualification?

OP, you sound as if a Medicaid facility would not be fancy enough for you (pardon me if I am wrong), but, just as our parents sent us to the colleges for which they could afford the tuition, so must they learn to live in the “facilities” they can afford/get federal aid for.

Get your darn siblings involved. Martyrdom/sainthood? Overrated!

Yep, “….the worry of putting either of them in a long-term care facility….” stopped me as I read too.

Consider the possibility that your research, if you chose to undertake it, might result in finding a clean, cheerful, SAFE comfortable residential care setting near you, where your loved ones could enjoy your frequent VOLUNTARY visits while receiving good care.

Consider that “lack of social contacts” has recently emerged as a major cause of Alzheimer’s/dementia. Is that part of your plan for your future?

Good geriatric care requires balance. Is that part of your present plan? Are you willing to do the work to achieve it?

First find a local caregivers support group, where you can vent away with other folks that know exactly what you're going through.
A lot of them do meet on Zoom if you can't attend in person. You can "Google" to see if there's one in your area.
Second, quit being the martyr and get your siblings involved in your parents care. They should be helping just as much as you are, and even if they don't live close, they can pay to have prepared meals delivered in for them or offer to come for a long weekend to give you a break.
Third, you must be realistic about the fact that perhaps someday you may have to place one or both of your parents in a facility. And that's ok. It will come to a point where you will have to do what is not only best for them but for you as well, as everyone has their breaking point.
And last but certainly not least, you must take time for yourself, away from your parents so you can do what you enjoy. I'm sure your children and grandchildren would like to spend time with you without you being all burnt out.
You say you've given up your social life. Why? You need that now more than ever. 40% of caregivers caring for someone with dementia will die before the one they're caring for, from stress related issues. Do you want that to be you?
If you're not careful and don't start taking care of you, it very well could be. Would your parents want you to give up your life for theirs? I highly doubt it.
So start making the necessary changes today to get your siblings more involved and to start enjoying your life again, before it's too late.

Where to turn? Here to this forum is a safe place to speak honestly of what you are dealing with without fear of having issues with family or friends. Some answers aren't always the nicest, but just ignore those and instead enjoy the feeling of understanding from the majority of other forum members.

Caring for a dementia loved one IS overwhelming. Big time!

I seriously think you should reconsider GIVING UP your social life. That is NOT good for you. You deserve to enjoy your life too and it is just not right or healthy for you to deny yourself. You are not caring for an acute situation like recovering from a knee replacement. Dementia can be a very long haul. Years and years of slow and steady decline. You need to feed your soul with time away from your caregiving responsibilities.

You should talk to your siblings honestly about your parent's conditions. You don't need to go into gory detail, but you don't need to protect them from hearing the reality of the situation. Do they come visit at all? My sister used to take our mom for long weekends until she just got too bad. It was such a blessing to have that time to myself and my hubby and have freedom to do what we wanted. She could then see for herself exactly what was going on in mom's decline and we could share stories about the odd and funny things that would happen. No one really seems to understand or believe you when you talk about how your parent's dementia is. They can't understand unless they've lived it.

What kind of condition is your dad in? How old are they?

I suggest that you start working some help into the situation now. I started with a cleaning lady, every other week. It was very helpful. Then an aide. Then more aides, and finally assisted living cuz it was just too much to deal with at home for me. And these things should be paid for with your parent's money because they are for their care. Don't spend your money on anything. You're already giving so much of yourself and need your money for your own golden years.

Best of luck. Please update and ask more questions.

Each situation is different. Watching your loved one decline is awful. I had no idea what I was up against. No one can tell you that this will work for you and this will not. Having a sound board will help. I have a very good friend that was mine. She advised me to share what was happening with my Daddy with my siblings so that they would understand what was happening. When it came down to his last five days on this earth my siblings were understanding and supported me and my decisions because I was DPOA and Executor of the Estate. If they felt they didn't want to know (even though they never told me) I just called them and told them what was happening. Even now I hear no complaints even if there are some, somewhere. I read about Dementia, Alz, researched everything I could so I could answer questions if I were asked. This is a great website to get some answers but also check out the ALZ.com website and read anything and everything on Dementia and ALZ. Ask people about their experiences and then try them. If they don't work try something else as I said... every situation is different. Blessings to you!

I echo Fawnby when she said

"You say, 'I'm able to care for both parents comfortably at home and without the worry of putting either of them in a long-term care facility.' Your being able to do that, in your mind, requires you to make all the sacrifice. Why? You could call on your siblings for support, but you don’t want to bother them. Why? What I’m getting at is, why are you less important than all these people? Why must you keep them happy but not yourself?"

How/why did you end up the one to be the caregiver for your parents?

Why CAN'T you "bother" your siblings?

Have you considered a facility for your parents? If not, why not?

Many of us understand what you are experiencing because we are going through it ourselves. Some of us have been through it multiple times. You’ll learn a lot of things here, and one of them is that you are not required to give up your life to take care of your parents. You have a right to a happy existence as much if not more than they do. Yes! That’s right!

You say, “I'm able to care for both parents comfortably at home and without the worry of putting either of them in a long-term care facility.” Your being able to do that, in your mind, requires you to make all the sacrifice. Why? You could call on your siblings for support, but you don’t want to bother them. Why? What I’m getting at is, why are you less important than all these people? Why must you keep them happy but not yourself?

The thing is, a long-term care facility is not a worry. It’s a way to have your beloved parents taken care of by professionals. It’s a way for you to go back to being a daughter who is not frazzled, upset, overwhelmed and exhausted. A daughter who has time to visit and have fun with them in their remaining days on this earth. A daughter who doesn’t resent her parents for being a burden. Please visit some so you can understand what memory care facilities are about before you rule them out.

And no, I have nothing to do with such facilities. I’m a caregiver taking care of my 4th LO with dementia. I’ve learned my abilities and my inabilities. You will too, sooner rather than later. I’m just trying to provide the shortcut for you to get to the point you need to be.

Welcome, MelissaKay!

Please vent away, but understand that you are going to get a lot of suggestions about how to get help with caregiving.

It is simply not possible for one not so young person to care for a dementia patient alone.

Let alone two! Thaks Lea, for pointing that out.

How much help do you have coming in?

Do you take regular breaks to get exercise, see friends, get to your own medical appointments and see your kids?

Any caregiver support groups in your area? Likely not as they are rare as hen's teeth and no one caring for elders at home has time to go to them.
I would consider being honest with your siblings. Not to ASK for their help in care and coping, but to HOPE they might help, with nothing other than listening if possible at the least. If not, OK, that's your choice. A lot of people don't HAVE other siblings.
I know nothing about your family situation but I truly believe our obligation is to live our own lives, as GIVEN to us by our parent. To give our energies to our own immediate family. I do not believe in sacrificing our lives on the altar of the end of life care of parents, and I feel parents should not require nor expect that (at 80 I most certain DO NOT/would not have it, and that is made clear to my kids.
You might consider a few hours of counseling with a Licensed Social Worker who does private practice counseling as they are often best at life transitions work.
I think I may hear buried in all this your worry about giving up your own life. If I don't hear it I SHOULD BE HEARING IT. It needs to be considered.
I sure wish you the best. It is clear you have the purest of heart; but the pure of heart are often nominated for Sainthood; it is a very very bad job description. Don't apply for it.