How do you preserve the life you've built?

I would echo most of the previous comments. For me, it came down to three steps: First, decide what I was able and willing to do. I knew that I could never be a full-time caregiver for my dementia suffering mother. She is demanding, unpredictable and can not be left alone. Although I admire the people who are able to take on this responsibility, I know that I am not wired that way. Facility care was the only option after she became unable to live alone. Second, get a good handle on the finances. Once you know how much money you have to work with, you can look for resources and services that fit the budget. Research options for when the money runs out if necessary. Third, develop a thick skin and make the following your mantra: "This is not my fault, I am doing the best I can and I should not take this personally." You will find people who empathize with you and support you (mostly people who have been through this themselves) and others who will question and criticize. Don't sacrifice your life and health trying to change a situation that cannot be changed.

Whatever you do, set boundaries. Oh how I wished I had found this website 7 years ago, things would have been so much different.

My parents never took care of their own parents, so they had zero idea what all would have been involved. I remember my Dad asking me to retire from my career, which had taken me years to build up [was self-employed] and I loved the work I was doing. I asked Dad if he had retired from his career to take care of his parents or my Mom's parents... his answer was "no" and he never asked me again.

But my parents were tugging me in one direction and another to help them. Here I was giving up my nice quiet lifestyle so that my parents could continue with theirs. This just didn't sound fair. Plus I wasn't the type of person who could do hands-on caregivig, but I did well with logistics. Oh my gosh, all the doctor appointments... here I had to remember about my Mother's health, my Dad's health, and my own health. Eventually I abandoned my own health.

Usually we can't get our parents to move into a senior living facility unless there is a crises at home, maybe two or three crises. All I heard from my folks was "we can manage".... if that was so, why was I so exhausted.

Thus, set boundaries, learn to say "no" or "maybe next week", learn to say "today isn't a good day". I am also an only child, and I really believed my parents still thought I was in my 30's instead of being in my 60's... I was tired !!

With respect to the unpopular decisions mentioned by BlackHole, it may be a blessing in disguise that you're an only child. You won't have to persuade do-nothing siblings of whatever suggestions/decisions you're making for your parents. My two older sisters took pity on my mom and reassured her (over my objections) that she didn't need to consider assisted living. One of those sisters had very poor health and is now deceased, and the other one has the busiest schedule in history and is almost never available to help mom. The bulk of assistance to my mother is provided by me and always has been. At least there's nobody there to put you in a similar position.

Excellent point about unpopular decisions, BH!

Excellent advice from CarlaCB, too!

GardenArtist, Sunnygirl1 and NYDaughterinlaw have all offered solid advice. The only thing I can add.....in a more general sense.....is to be prepared to make unpopular decisions.

Be prepared to be viewed as "not doing enough" (often by people who have no business judging you and/or have nothing to contribute). Be prepared for people to make the stupidest, most short-sighted comments you've ever heard.

These years require a strength that no past experience prepares us for. Keep combing this forum for support and ideas. Pay special attention to the stories of those who, with good intentions, gave until they cracked and kept on giving. Plenty of tales about caregivers who sacrificed careers, marriages and/or their own retirement to become an unpaid and yntrained nurse, chauffer, physical therapist, cook, maid, diaper changer, lawn care service and every damm thing else.

Sounds harsh, but your parents will get older, more needy and more senile whether you go down the chute with them or not. If being a logistical caregiver is more appropriate for the life you have now and the life you intend to have in the future, then embrace that and don't look back. There's a certain flavor of "you're the only one" that gets foisted upon only children -- from Day One. Caregiving is hard enough without succumbing to misplaced guilt.

This really is the million-dollar question. If your parents are like many others, they're not thinking in terms of expectations, or how their future needs are going to evolve. They're thinking that they need help, and you are the only person they can call on.

The first thing you can do is to investigate other sources of help for them and to try to introduce the idea of other avenues. I succeeded, over time, in getting my mother to accept a neighbor lady moving into her house who is helping her out with errands and transportation and keeping an eye or her in general, in exchange for free rent. That has saved my life and my sanity. My mother was extremely resistant to it at first (she wanted me to live there but no one else) but I worked on her. Over time it has worked out great for both of them. The live-in person has helped mom through several minor crises (a fall in the shower, an electrical fire in the middle of the night), and mom is grateful now to have her there.

It sounds like your parents may be looking at a nursing home situation. If so, you need to start broaching the subject, checking out places, accompanying them to drs appointments and bringing it up with their doctors. Even that is a lot of time and effort, I know. But if you're not proactive, there will be more and more crises and it will be very hard for you to "just say no" when you're the only possible source of help.

Find out now what their finances are like, whether they have long term care insurance, whether they've thought about what they'd do if they can no longer manage their home or transportation needs or day to day activities. Keep the emphasis on their choices, their decisions for themselves. They need to see this as their responsibility, not yours. It's never too early to start them thinking in that direction.

The middle age years are critical for your future both in terms of maintaining your health and building your financial resources so that you and your spouse have what you need if and when the time comes. What are your parents' financial resources?

Everyone needs healthy boundaries. Period. Your parents cannot "take" your "time, life and happiness" unless you give it to them.

What's important is not how much you do but rather to do what you can with love. You are not responsible for doing everything for your parents - it's impossible for any one person to do it all - but you can make sure they get the resources and services they need. And that process can become very emotional, so if you can afford a Senior Care Manager as SG suggests, hire one.

Not everyone is cut out to be a hands-on caregiver and that is okay. Being the person who manages their affairs is just as helpful and important. This forum has many articles and threads about managing your parents expectations, their finances, their caregiving needs, etc. Can you tell us a bit more about what your mother's expectations of you are at this point?

I was in a situation similar to you when I not only had to step in as Durable POA and Healthcare POA, with my cousin who has dementia, but move in with my parents, who were having some medical issues. It's extremely difficult to navigate when you are self-employed. I'd get things lined up now, before you are faced with an emergency. I would call it AVOIDING CRISIS.

Information allows you to know your options. That's why I would also consult with an attorney about their situation to see what if any measures need to be taken, considering their conditions. I'd also make some plans for someone in your business to step in for you, if you encounter an emergency with with either of parents. It's tough when you get a call and have to show up in the ER and can't leave for a couple of days. Make sure you have all your contact info handy, copies of POA, keys to get in their house, etc. (I would prefer to keep the original documents, since they will needed eventually and your parents may not remember where they are.)

Your profile says that your dad has dementia and that your mom suffers with depression. And that they are having difficulty caring for themselves in their own home. I'd make sure they have appointed their Durable POA, Healthcare POA, Advance Directive, etc. Whether it's you or someone else, but I would assume you, since you are the only child.

I would then learn as much as possible about dementia and depression. That way you won't have any unrealistic expectations. If they consent, you might have a professional assess their situation to see what services they might need or if they really need more help with their daily care that an Assisted Living facility could provide.

With your dad having dementia, it's only a matter of time, before he will need care with all of his daily activities like bathing, dressing, toileting, etc. That along with challenging behavior, makes it difficult to handle in the home.

You certainly can pull back and set boundaries, but with people who have dementia, they aren't really going to be able to process or understand that. And with your mom having depression and having to care for your father......I'm not sure how productive that would be. Caring for a spouse with dementia in the home is extremely challenging. I often read of how it is so depressing, stressful and overwhelming. I can see how she might be desperate, scared and confused. She may need more support right now. Granted, if you are not able to spend a lot of time providing daily care, I might see if you can get her some help inside the home or suggest Assisted Living, where they both could get some help.

Also, if finances allow, you might hire a professional Senior Care manager who can take care of a lot of the things that you are not able to do.

My parents health improved and they now do not require as much assistance AND I placed my cousin in Memory Care, which is were she needs to be since she now has severe dementia and can do nothing for herself. Still, I'm always on call. My travel is limited, since I don't know what the next day holds. I have had to reschedule business matters and even have lost business due to my family obligations. It's challenging, but I'm not sure there is a way to avoid it. I try to find a healthy balance in taking care of my affairs and supporting my family members. I think we learn as we go. I have learned that this road has taught me some great life lessons, as well as many rewards of the heart. Having compassion and caregiving for family members CAN bring you much happiness, despite the sorrows.

I hope you get some more responses and others can share their experiences.

Errata, but very important:

1. Don't put off addressing your own issues, especially medical ones. Some of us have, and have paid the price in poorer health.

2. Whatever you decide and plan, include respite time for everyone. Don't let yourself become a slave to chore obligations, such as housework. If you're exhausted from hospital or rehab visits, don't come home and clean just b/c you normally do it daily or weekly.

3. Missing that "down time" and respite time will catch up to you, especially if you push yourself physically.

This is a broad question, with a lot of different options and potential solutions, although it's certainly very challenging. You're wise to address this now.

I think it's one that many of us have found demanding, but also possibly rewarding, as the demands of caregiving expand.

What I would have done if I had to do it over again is find support through agencies a lot earlier than I did. Get them on board and support in place right away, although this isn't easy because parents often resist either because (a) they feel they don't need assistance or (b) they don't want outsiders and strangers coming inside their home.

I would also spend time assessing what I thought would be issues and identify solutions, whether it's from me, neighbors, church friends, senior centers, governmental agencies, or paid agencies.

Importantly, decide how much time and effort you want to and can spend, and be firm on that. Find options for activities you can't or don't want to handle.

Seguing into old age requires just as much planning as running a business; the tasks and issues are different and often intractable, and obviously challenging b/c they deal with family and aging. But starting early and identifying solutions can make a world of difference.

I think this kind of extensive contingency planning for as many situations as can be identified would be a good way to start.

Another poster has posed a similar question on the scope of caregiving and identifying solutions. I suspect she'll get a lot of answers. You might want to follow her thread:

https://www.agingcare.com/questions/Just-recently-moved-my-parents-into-Oklahoma-City-Living-independantly-but-what-programs-are-availab-211788.htm

I would also appreciate your own response to the suggestions. There are ways to be creative in approaching caregiving, and many of us are always on the alert for these options.