How in the world do I add being a caregiver to my parents? I don’t know what to do!

I'm sorry that such illness is now part of your lives.

A needs assessment or appointment with a social worker may uncover your folks needs, their wishes & start the ball rolling towards a care plan. Care services to their home may be possible & enough now or for a time. If not enough, assisted living may be needed sooner rather than later.

I’m so sorry that you are going through this. My mom had Parkinson’s disease too. It’s tough to see our parents declining.

You have your hands full. You may want to consider placing your parents in a facility.

Wishing you peace as you continue on in your caregiving journey.

I am sorry to hear this, however, with 3 children you will not be able to handle this, there is no way.

My suggestion would be to place both of them. Where my mother and step-mother are, the doctor comes in weekly, for other appointments they are taken back & forth at a nominal charge,

There will someone with them 24/7, do something before it becomes an emergency situation.

Sending support your way.

Mary, I read your other post from a year ago. At that time you said you did a weekly visit to them? What did you do during those weekly visits, and how often are you visiting them now and what do you do for them? (And how far away do they live?)

You canNOT become their caregiver. Even though you are young (30's), the stress of caregiving for your own family AND your parents will affect your health.

Your responsibility is to your own family.

I would say that the "eventually" as in "eventually one or both may need assisted living" is NOW.

Do you know the financial situation of your parents? Are you their POA/HCPOA?

Respectfully, you *do* know what to do, you just dread telling your parents and dealing with the fallout. I don't blame you. But you must tell them no.

If I were in your shoes I would approach your parents under the assumption that they are rational, loving people (giving them the benefit of the doubt -- many parents are not). From this perspective, I would have a planned discussion with them as to why you won't be providing more care to them: the existing extra burden of your profoundly disabled child plus 3 others means there is 0 time and energy left at the end of each day to add any more to your plate.

Then you present what you think your parents' options are: based on their means, what it would cost for them to hire enough help for each day/need; transportation options; house upkeep labor and costs; etc. This lump number can then be compared to the cost (and benefits) of transitioning to IL then AL, in a continuum of care community. FYI the only "benefit" of staying in their home with the amount of problems they have is that it "feels comfortable" to them. There are no other real benefits because managing the affairs of 2 more people and house will be a big undertaking.

Then there's always the risk that when they get to the point of really needing to be transitioned, they won't cooperate. Make the goal to get them in there sooner rather than later. Take vidoes of some candidate facilities to show them they aren't dirty, depressing, scary, etc. Also, your parents have probably spent their entire lives having YOU as their retirement plan. I'm an only with a surly single Mom. I've had to make it blatantly and abundantly clear that the trigger for her to go into AL is when she is no longer safe in her home OR I'm overwhelmed. I've videoed her agreeing to this. My hubs and I have 2 other LOs we are PoA for, besides her.

Your parents may be shocked, angry, depressed, all the above at the suggestion of a facility. Your job is to remain cool like Spock and just give them the cold, hard facts. It doesn't mean you don't love them. But if they think they can add their care burden to your already big one, then what does that say about their love for you? Do they *want* you to burn out and then not be able to care for your own family, not to mention they themselves? This is the hard truth they need to come to grips with if they are reasonable people. FYI I often wield guilt like a sword, when appropriate, because sometimes putting things in perspective like this is the only way to get people to think through what they are asking.

Stay strong. They will get over the shock of having their expectation turned into a disappointment -- but it will only be temporary. Your own spouse and kids come first, no matter what. Defend that boundary like a lioness. Again, it doesn't mean you don't love your parents. They had their entire lives to ponder and plan reasonably for their elder years, even facing unforeseen problems like PD and liver disease. Aging throws a lot of crap at a lot of elders. Few are spared. Don't feel guilty. Your situation is stressful and grief-invoking. But do not feel guilty about not being able to provide their hands-on daily care. It is what it is.

I wish you clarity, courage, wisdom and peace in your heart as you have the necessary conversations with your parents.

Good Morning,

My dear Mary, don't be at a total loss. There is help out there. These are just a few suggestions that I hope will assist you.

I think your parents may be beyond an Assisted Living. Can you find a facility with different tiers, for example, some places have Assisted Living, short-term rehab, long-term rehab, nursing home, respite care, palliative and hospice. Basically, as the illnesses progress they move within the same facility just a different wing that suits their needs.

My mother has Lewy Body and this beast of disease you have keep ahead of. It's hard but there are services out there--home care, day respite programs, etc.

If either of your parents were in the military you could contact your VA Office about Aid & Attendance.

Your situation is demanding in all areas of your life. The less you have to worry about with your parents, the better. Of course, this takes $$$. You can go online and do a virtual tour or call "A Place For Mom". They will find a place for "both" of your parents. You can still visit your parents but you will not be responsible for "everything". You can check on them, bring the children, the other residents will love it!

You need a "team" of people. Don't feel guilty if you can't be everywhere.

These facilities have x-rays taken there, dentist, hair, etc. The resident/patient is not out in the van everyday being transported all over the place.

If one of your parents is more mobile, they can still get around and participate in activities.

I would NOT say as one other person commented, "I will not be taking care of you". Just simply say, that you want to keep them both together--cared for and safe at night, but perhaps it may not be in their home. You can oversee everything. When someone is sick you want to make them feel like they are loved and cared for and not on their own.

There are ways of saying things that they won't feel abandoned. Hold their hands, sit down and look into their face. Assure them. Let them know you are working on a plan. Parkinson's as you know is progressive.

You need a Social Worker, assessment by a primary care giver and line up your ducks for the proper paper work, POA, etc.

There is an answer here. I hope I gave you some encouragement. I will pray for you. Call on the troops--collect your information and you can always change things too. You are not stuck if something doesn't work out.

You can go online and read reviews...you don't have to run around to do this.

Realistically this could be happening to your parents whether they had children or did not. If they did not have children there would be no expectation that a child step in and handle things. If you lived in another country you could not do all these things that you mention.

My point is that you need to make it clear that you love them and that you are so sorry for what they are going through, but that you cannot be the caregiver. Trying to do this would break you and do them very little good thereby.

Placement is almost a certainty. Stop now with making this YOUR problem. It is (sadly) their problem so that your question now for your Dad is "What are your plans?" And YOU cannot be the answer as in "YOU are the plan". You are going to have to toughen up to protect yourself AND them. They now need care. You cannot do it, and it is not your responsibility to do it.

I am so sorry for this dire diagnosis. This is a tragedy. But it is not something you are able to nor qualified to "fix".

I agree with another poster. There is no eventually, it is now. Talk to your father about managed care for the two of them. Make sure he understands that you are not part of the solution. You cannot take on any more than what you are doing now, even for a little while. You are willing to assist getting to the next stage but you are NOT the next stage.

You can’t. And with having your own kids, your parents should not expect you to.

You don’t. Why would you even think you have the capacity to take care of two more people?

You don't manage it because it's not possible with your own family and their needs. I think you already know this though.

Considering that both of them need a lot of care, I don't think that even moving a live-in caregiver with them will be enough. Taking on both of their needs is too much for one person, even a professional.

Now is the time for serious plans to be made. Like your parents being moved into AL and an private aide hired to handle doctor's appoitments and lab tests.
AL is probably the best bet for them.

Skip the outside help with household chores and go directly to the assisted living option.

You won’t have the time or energy to manage all their illnesses plus the people you hire to come to their house. At assisted living you immediately get help with everything. It takes much of it off your shoulders.

You must make it clear to your parents that it’s the only way.

Mary, contact your local Area Agency on Aging. They can set up an appointment with a social worker. They can also set your parents up with Case Management services.

Either of your parents' doctors or clinics might also be able to refer you for social work support.

You don't. You can't. Something's gotta give. If your state has a Senior help agency, call and ask for suggestions. IF YOU CAN AFFORD IT, call an outfit like Home Instead (I used them and they were excellent, not cheap but affordable) and it will give you a break. The money is the issue. Do your parents have resources to pay for care? Do you have a POA? (crucial). Do your parents have caring neighbors who can help out? (Don't discount any potential source of help!)

It does sound likie your parents need a higher level of placement than Assisted Living. Your father is the more cognitively able of your parents, so help him choose a care facility that can manage both of their needs.

The answer is you are not going to be able to care for them. They have conditions that are only going to worsen. They need to move into a facility now....one that has different stages of care.

Get options for facility placement for them both. You can begin this with their PCP and, a referral to a geriatric case manager/ Social Worker who can help you navigate options for their care placement in a facility; you may also want to speak with an Elder Law Attorney for directions for your own well being as well as understanding the many dimensions of elder care. Be sure that you get POA documents and other legal decision making etc documents in place. Be clear with the parents and PCP that you cannot provide care in your home nor in theirs and,that although no one ever likes it, facility placement is a must.

Sounds like Placement speak to a social worker soon .

You asked how to get a social worker. Have you thought about hospice care? If not, please check into it. My husband was in in-home hospice. The provider sent social workers, nurses, and caretakers. They didn't come every day, but were a huge help, and so nice to share their experiences and knowledge. Good luck!

You don’t. You can’t possibly take this on. The first step is to cut yourself some slack and give yourself permission to NOT take this on. It’s not like you have the resources to do it and are just refusing to do it. Then you need to find a social worker who will help you navigate getting them the care they need. Either at home or in a facility.

Start with an In-home hospice provider for your dad. Preferably a non-profit one! They will provide a social worker and get approval from his doctor. The social worker will help you with everything going forward. I did this for my dad.

While you father is able, have all the legal work (will, POA, HCPOA,) done. Make plans with them. Tell them that you have your plate full and cannot contribute to their care. We use the term in our house "no spoons in the drawer" Look up spoon theory. You will need plans for both of them and plans for each of them depending on which parent passes first and their care level. Have them involved in drawing up these care plans. Will some help with cleaning in home work for now? Maybe meals on wheels? Home health care? Do you need round the clock supervision (Facility placement? or live in care taker?) Some "facilities" have independent living cottages up through skilled nursing care. This might be an ideal arrangement depending on their finances. Residents pay for the level of care that they need. The sale of their house and assets would cover some of it.

Do spend as much time with them as you can to share life. My mother lived to be 95, and I consider her last years bonus years. I would go through boxes of old photos with her asking about the people in the pictures and the memories that went with it. I asked her about her past and her memories. Since she was not a story teller, I had to use a lot of "prompts". When she died, I felt so glad I had done that. My father died at 70 after a period of rapid deterioration. I had small kids and was not able to spend that kind of time with him as they lived several hours from me.

My mother's wonderful parting gift to my sister and I was a notebook with all of her legal papers, her financial assets, her funeral plans...just everything. We didn't have to do much besides write the obit (and Chad at Snyder funeral homes was great with that) pick out flowers and decide what to have her dressed in. Seriously, it was pretty stress free even though done during COVID lockdowns. The worst part was her beloved pastor had been promoted and could not do her service. We had some weird substitute instead. He got my name wrong during the service and my sister spoke up right in the service and corrected him. I also wrote the eulogy because I had a bad feeling about his ability. We have implemented this notebook idea for my MIL. This has proven very valuable as my MIL now has dementia and today we are making care plans for her.

We got social services at the hospital involved. I have visited care facilities and asked friends about care facilities they have used. The assisted living community we plan to use for my MIL also has been good with guiding us. Many counties also have councils on ageing. Hospice might have services you can use. The pastor of your church might have ideas. I'm sure he or she has had some old congregants who used these services. Visiting Angels services might also help.

Your first priority is your children and your self. This is not selfish, just realistic. I suggest you imagine what they would do if they were alone, without an adult child. They would find a solution. Tell them you are willing to coordinate their care but cannot personally provide daily care. This is not a selfish position, rather a loving and realistic offer to help.

You have gotten so many wonderfully supportive answers.

Now comes the hard part: you KNOW what you need to do. YOUR family comes first. Trying to 'do' for your folks will take you down, and fast.

If this were my parents, I would seek out a living arrnangement where they can be together, yet with outside support as needed. An Assisted Living apartment situation comes to mind. One that offers many levels of care, as your folks grow worse.

My DH had HepC and developed liver cancer. Miracualously, he was able to receive a liver transplant and then was ccured with Harvoni. IDK how far along your dad is, but has Harvoni been mentioned? It's truly a miracle drug. Eradicated the HCV and gave DH a second chance at life.

Your mom--so sad, you can really live a long life with Parkinson's, but sounds like mom is pretty deep into it.

You can only really be their advocate, not their primary healthcare provider.

As for the many medical visits, etc., only you can decide how involved you can be in those. Perhaps you can piggyback those so that maybe ONE day is jam packed with Dr visits, and not spread them out over many days?

I worked in Elder Care and I was the person who took clients to the Drs. I'd take copious notes and then report to the family. That may have seemed weird, but it worked well.

I didn't see mention of mom & dad's financial status. IF they can afford help--please take advantage of that. Get them used to outside help and not relying on you for everything. There are wonderful CG's out there, you may have to try on a few before you find one or two that are a good fit.

Please don't try to do this on your own. My DH is currently caring for his mom at home and it has taken him to his knees with depression and exhaustion. And he has NOTHING else tugging at him--he's retired and I do all the household stuff.

CG is brutal--and CG for elders is it's own kind of awful.

Good Luck on this path.

(1) You need to take a breath and know that it is one step at a time and that the needs ARE NOT SOMETHING YOU NEED TO DO:
* Yes as other(s) said: take care of you / your immediate family FIRST.
* Write and date all notes and documentation (when w your parents, write down what today is like ... so you have a record).

(2) You need someone to manage all this
* contact county senior services - elder care
* social worker: some manage care.
* Find ind care givers (or like me) someone who manages care
* Ask their medical providers for referrals and letters indicating the level of care they need (you will need this authorization).

(3) Get all legal authority as you can NOW.
* You need to be able to make decisions for their care now and moving into the future.

(4) They likely need to be in a care facility.
* Call some and ask for an appt to speak with the administrator (they may divert you to the in-take coordinator). Get a tour, talk to as many people as you can at a facility.

(5) Ask for support any and everywhere you can, including updating your posts here (it is a huge resource of support and information)
- Next Door
- Churches (bulletin board)
- Facebook (?)
- Friends, neighbors (for referrals)

(6) If you can afford it, get a therapist / a family therapist to help you organize and figure out the 1,2,3 needs and also how to manage your emotions. This is a huge challenge / need for you to take on / go through. You need professional support.

Gena / Touch Matters

From your profile, I determined that you are in a University town (OU), so that's good. At the present time, you are overwhelmed and need two kinds of help: 1) a social worker who is skilled and knowledgeable of the agencies in Norman who provide a) the best home health care available or b) the most highly rated skilled facilities which might be where your parents need to reside in order to receive all the needed services that are certainly in their future. You are going to be helping your parents by choosing free, sliding fee scale, or private pay services to evaluated and deliver services to them both. I viewed a Facebook page for "Aging Services of Cleveland County" with a 405-321-3200. Begin to view yourself as the "Captain" of the team that delivers direct care. You might need a counselor for yourself to help support you with the guilt you may feel. The other kind of help you can benefit from is the Services of a good Elder Care Attorney, who guides you through "Power of Attorney" for both medical and financial matters for both your parents. Please do this very soon while your Dad has all his mental faculties. MargieRKB has some great suggestions in her post. The physicians of your parents may know of excellent resources for the care, treatment, and transport of your parents. Hospice Services might also be appropriate. You will survive this as being able to be a loving daughter, while 'directing the care' of you parents, but not as direct care giver. Your first obligation is to your own children.

First, I am sorry for all that is on your plate.
Second, there are liver transplants and drug treatment for Hep C. A cousin was cured of his Hep C with medication, so your father can get info about that as he is of sound mind still. Sadly, my Dad died at age 71 from complications from Hep C in 1997 before there was much known about it or any treatments.
I don' t know how old your parents are but if you are in your mid thirties they could still be relatively young.
Third- I agree with getting the help of a social worker. Where I live you can contact what is called the Area Council on Aging. Your locale should have something similar. They can connect you with agencies to contact for info, assistance, etc. I also had a geriatric care manager come do an assessment of my Mom at her house who could gauge my Mom's abilities and whether her living situation was suitable for her level of ability and how it could be made so. They also had info on facilities, caregiving agencies, financial assistance etc... They charged by the hour for their time. Not cheap but helped me navigate the situation.
Fourth- The ACA mentioned above could tell you how to contact a certified elder-law attorney or you can search one out. Get someone experienced in just that if possible and with a good reputation. You will eventually need durable power of attorney, medical power of attorney or your parents will need medical directives. Make sure all their finances and wills are in order. So you will need to have a conversation with your folks about those if they do not already have those things in place.
It may be best or it may not for both your folks to go to a continuing care community. I would think it would depend on your Dad's age and prognosis. If not good, then a continuing care community would probably be best. Also, there are small group homes. Again, your social worker or geriatric care manager can help provide info. My elder law attorney was also a help as he was a legal guardian for some of his clients and he was familiar with some of the local facilities. He gave me a list and also told me where his clients were getting good care.
If not a continuing care community then placing your Mom may be necessary to help relieve your Dad of the burden of her care while he tends to his own situation and to insure her proper care.
If your parents are capable, they will be able to make these contacts for themselves. If not, I am afraid the burden will fall to you. Do you have friends who can help out with your kids? Maybe some of them could accompany your folks to some doctor visits. I know it is a lot. Time to surround yourself and them with a support team. Many people will help if you can give them specifics such as "Yes, I need someone to stay with my kids on Tuesday when I take Mom to her doctor appointment". "We could use a meal on Thursday after we get back from Dad's treatment" Otherwise, people don't know what you need. Even if they are placed in a facility, you will still need to address some of these things.
We are here to support you if you need us. All the best to you and yours- prayers as well.

Call "A Place for Mom" and see if they can be placed together? You have too much on your plate..........let the professionals care for your parents so that you can be a great and compassionate visitor.

As an immediate need, you can check into their insurance to see if it will cover any visiting nurses.

But, going forward look for some in home care programs...

We have one here that is called IRIS. Your parents can select whatever caregivers THEY choose(that includes family)!!! IRIS will provide the funds necessary for their care and also for anything they may need in the home that is not covered by their insurance. For example a lift chair. They also help pay for outside activities if needed or wanted.

There are programs in every state.

A lot will depend on the parents' financial situation, but there are usually private geriatric case managers, in addition to social workers available through the local Area Council on Aging. (These are usually county agencies, and their services may be income restricted although they may provide general guidance at no charge.) Most hospitals also have social workers on staff, and the parents' physician(s) may be able to make a referral to resources. Private case managers can be pricey but may be well worth the cost if parents can afford it. Check websites, state licensure and reviews.