Our discussion focused on Linda’s decision to find an assisted living facility for her mom. You’ll hear in her voice how tough the situation—and decision—was for her. A few thoughts from our conversation:

–A placement decision is not a replacement for family caregiver. Instead, it’s an extension of the care provided by the family. The role of family caregiver is as critical when a caree lives in an assisted living facility as when the caree lived at home.

–If you face family opposition to your caree’s move to an assisted living facility or nursing home, tell the “shoulding” family members: “Thanks so much for your concern about our caree. She’d love to see you! When can I tell her to expect you?” And, that’s it.

As you listen to our interview, what hits home for you? How do you respond to Linda’s story?

Program Note: Our next show is Thursday at 1 p.m. CT. Viki Kind, author of “The Caregiver’s Path to Compassionate Decision Making,” joins us for a discussion on how to keep a caree safe while also respecting their definition of “quality of life.” You can listen live here.

Resources

Ask Denise: How Do I Walk Away Without the Guilt?

Ask Denise: How Do We Find the Right Facility?

Ask Denise: She Says She’s Reached Her Limits

It amazes me that we actually adapt to conditions such as these to the point that they are normal! I’m certainly grateful that it was a slow process because a nice stint in the state mental facility would have otherwise been the result of such a dramatic and comprehensive lifestyle change.

I’ve been a full-time primary caregiver for over 2 years now for both of my parents. When I look back at my life before that, a complete segregation exists between those lives, as if there are two different people. Further complicating things, my initial backward glance covers just an intermediate time called the ‘trying to care for the parents from a distance through my sister’ period.

In fact, the difficulty presented by long-distance care giving lead me to relocate my parents with me so that I could manage their care and ease my ever growing anxiety and feelings of helplessness. Other incarnations of Derek exist that are equally distorted as time passes. The ‘before parents were debilitated’ period as well as the ‘when parents were still ok and we took so much for granted’ era. Each of these now seem so foreign and surreal.

It fills me with a deep sadness when I look back at this past 7-10 years or so, and realize that so much time has passed with suffering and life realignment. There have been countless losses and changes, yet strangely for me, so much growth. I can solidly testify without speculation that I am indeed a different person than I was 10 years ago. Most people can say that though, right? We all learn and grow, hopefully, in that length of time. Choices are made and paths are taken. Do any of us really know where we are going? We may think we do, but I dare say most of us have no idea where we will end up.

I am, at present, analyzing how my life has changed, who and what I have become, and what my future looks like. How will my today shape my tomorrow just as my yesterday shaped my today? I must face the very real probability that within the next couple of years, if not sooner, my perceived identity, as it is today, will no longer exist except as a reference in conversation. What a level of fear this evokes if left unchecked. Knowing that I must add some layers to the ‘Derek, son of’ identity is a must and at some point in the past those diversified layers existed. How odd is it that the very act of helping my parents, trying to keep them alive and give them the best quality of life left, has eaten away at those very layers that will be necessary to preserve and protect me once my parents are gone.

More thoughts later…blessings…
-Derek

Upcoming: Am I really just an overwhelmed dutiful son, or have I actually become lazy?

Hello Denise,

Your website has been like a breath of fresh air to me. Can you please tell me where I might find info on long-distance caregiving?

My situation is complicated: my parents have 2 homes; one here in Montana, where I live, and one in Ohio (where my mom grew up) near my sister. Recently, my dad’s Alzheimer’s is getting worse, and my mom is much more comfortable in Ohio, in her childhood home because their Montana home is a remote cabin miles from anywhere. My sister, with her large family of 8 kids, lives up the road from my Mom in Ohio. My mom and my sister help each other all the time; my mom baby-sits; my sister drives our parents to appointments etc (they don’t drive any more). They are like a closed, co-dependent club and much closer to each other than I am to either of them; I was always closer to my dad.

My sister and my mom have hinted and sometimes blatantly told me that I should move out there, into my parents’ home and live with them and help take care of them. I have offered to take care of them out here in Montana, but my husband and children do not want to move to Ohio, and frankly, neither do I. I would be absorbed into also taking care of my sister’s many kids and I do not want to do that! My best idea is that my parents come out here and stay with us for about a month this summer. We can go up with them to their cabin for about a week and the rest of the time they can be at our house. I told both my mom and my sister that I think they need a break from each other; that I want to help by helping them here, but that I cannot move across the country. My husband also wants to see my dad, and my husband cannot leave his construction job to go out to Ohio….

So…I deal with tons of guilt because when all is said and done, I have been very much closer to my dad and I miss him and feel like I should be with him…if they were in Montana! Do other long distance people deal with this?! My mom and sister seem to feel it is an easy thing to uproot one’s family and move across the country. I don’t feel that way. It would really have a huge impact on us, financially, socially and in so many ways. I am not comfortable in Ohio except for visits.

I need suggestions and constructive things I can do, if you please have any. I am going to call the Alzheimer’s Association tomorrow and try to have someone from the Geriatric Care Management go see my parents, and try to set up something so my sister doesn’t have to drive my parents to all their appointments. Last fall I went out to Ohio and set up something with an adult day care place, but my mom never took my dad there, and does not seem to want to do that. I am also wondering if I can get some meals delivered to my parents. I don’t want to neglect my responsibilities here, but I just can’t move to Ohio.

Do you have any suggestions on other things I can do? And about my guilt-Is it OK for us NOT to move? I really, really don’t want to move, but I want to help my parents.

Many thanks for your help. Just writing this out helps me a lot!!

Hi,

Thanks so much for writing! First, you’re doing a great job supporting your mom and your sister from a distance. Your ideas (contacting the Alzheimer’s Association, geriatric care managers, Meals on Wheels) are great ones. And, you’re wise to realize that you can help from a distance! It’s also a very nice idea to have your folks visit for a month this summer. As your father’s dementia increases, you may find that these trips become harder and harder for him to manage. Do it while he can, but be aware that, at some point, it may be too much for him (and your mom).

Your guilt over the distance is common and completely understandable. I think, though, that guilt comes with the territory, no matter where you live. If you lived five minutes away, you might feel guilty if you only helped a few hours a day and your mom and your sister wanted more. It’s easy to feel that you’re not doing enough. But, when you do your best (and you are doing your best), it’s always enough. You can’t do any more than that. And, remember, distance does not change how much you love your father (and your mom and your sister). Regular phone calls and letters home to them will let them know how much you miss and love them. Writing your dad and sharing your memories of your life together may be a wonderful way for you and your father to stay connected.

Moving your family from Montana to Ohio may, on paper, seem to solve some of the concerns you (or your sister and your mom) have about your parents: You’d be available to help out on a regular basis, which would be wonderful for your parents and your sister. The question is, though: At what cost to you and your own family? Moving cross-country is such a huge undertaking, even if the move is because of a good job opportunity.

Uprooting your family to help your parents, although a wonderful idea, would seem to cause more problems than solutions. It would be great if you lived closer, but our world is different these days–many families are physically separated by distance (which may be easier to manage than the emotional separation some families experience).

Stay in Montana. Continue to research options for your mom and your sister. Continue to offer regular time off for your sister (such as the month-long stay this summer). Be supportive of your sister’s role, express your gratitude for her ability to help out. Doing these things are wonderful. And, when you do these things, you have no reason to feel guilty.

Hope this helps! Remember: You’re doing all that you can–and that’s always the best you can do.

Resources

Seven Tips for Family Caregivers

Family caregivers ask Denise M. Brown, Editor and Publisher, Caregiving.com, for her insights and suggestions to their caregiving conundrums. Have a question for Denise? Just e-mail her. Denise will do her best to answer questions within 24 hours.

If you or your care recipient are in a crisis, we urge you to call a health care professional immediately for assistance. Denise only provides general insights about general situations. You should always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.

During the show, Sheri referenced some helpful organizations, which I’ve listed below:

National Association of Senior Move Managers

National Association of Professional Organizers

Certified Aging-in-Place Specialists

AARP Home Safety Checklist

By Sheri Samotin

(Editor’s Note: On a regular basis, we invite health care professionals and family caregivers to share insights as a guest blogger on Caregiving.com. As we launch our online support group for long-distance family caregivers, we asked Sheri Samotin, a family transition coach, to share her top tips to help long-distance family caregivers. You can listen to Shari and Denise discuss these tips on Your Caregiving Journey; the player follows the post.)

1. Get yourself organized. One of the hardest parts of long-distance caregiving is keeping all of the balls in the air. The more organized you are, the less stressed you are. Checklists and calendars are a great help, and there are many wonderful tools available to facilitate communication between you and your care recipient, as well as between your caregiving resources, and among those who need to know within your family.

2. Get your care recipient organized. Everyone should take the time to put their affairs in order, but this is especially true in the case of long-distance caregiving. It is critical that you have all of the information that you need to handle your care recipient’s affairs at your fingertips, and that you have the appropriate permissions in place to tackle issues as they arise. This goes beyond having a Power of Attorney, and includes a complete reference of assets and liabilities, passwords, household inventory, listing of service providers, details regarding final wishes, and on and on.  Establishing a family transition plan is the best way to make sure that you are prepared.

3. Plan ahead. Think about what will happen in an emergency. Who will be your care recipient’s advocate if she falls and has to be taken to the emergency room? How quickly can you (or another family member) arrive on the scene? If your care recipient lives in an area with blizzards, hurricanes, brushfires, or earthquakes, what is the emergency plan? How will you remain informed? Does your care recipient know what to do and who to call?

4. Understand that it’s all about control. Caregiving is all about control. As the caregiver, you want to control everything so that “nothing bad” happens. Your care recipient wants to remain in control so that he or she continues to feel like a complete person. If you can remember that control is at the core of every action and every reaction, it will help you keep things in perspective. When you become frustrated, ask yourself why you are trying to control the situation, what will happen if you stop, and why YOU feel out of control.

5. Ask for help.  And then, ask again. There are so many wonderful people and resources available to help you. Don’t feel like you are less of a caregiver when you accept help. Be specific about what you need. It’s much easier for someone to respond to your request to bring Dad dinner one night a week then to respond to the vague request to “keep an eye on Dad.”

6. Take care of yourself. You are no good to anyone if you get sick, so take the time to take care of yourself. Eat well, exercise, and get plenty of rest.

7.  Engage a professional, such as a coach or geriatric care manager. While it might seem expensive, engaging a professional to help you may be a wise investment. A coach or geriatric care manager can assist you in putting all of the pieces in place early, ideally even before your aging relative’s health has deteriorated. This professional can help you select your caregiving team so that you know exactly who to call when the time comes. As a neutral third party, your coach or care manager can help navigate the family dynamics that often are heightened during times of transition.

We’d love to know: What tips would you add?

(Sheri Samotin is a family transition coach and President of LifeBridge Solutions which offers daily money management, insurance claims advocacy, household transition services and estate administration support. Sheri brings more than 25 years of business and management experience to her work.)

Related articles

• Ask Denise: How Do I Prepare for My Own Future? (caregiving.com)
• Ahhhh.. It’s About Keeping the Caregiving (caregiving.com)