We spoke about the reasons why we may suffer from SSS, including:

1. We become the source of knowledge about caregiving, which means it can be hard to trust that another can fill our shoes.

2. We become attachment to the identity of being the one who can do or of being the hero.

When we become too much of the person who does it all, we can become frustrated, resentful and angry. When we do too much for others, we’re not doing enough for ourselves. And, that’s where the frustration and anger enter the equation; it’s our body’s way of saying, “Hey, what about me?”

Anna reminded us that help is healthy and that we each know what feels healthy.

How do we overcome our inability to ask for and receive help? The first and most important step is to acknowledge the fear we have of letting help in.

1. We may fear rejection which keeps us from even asking. We don’t ask, so we don’t get a “No.” (Read Risk.)

2. We may fear losing our value if we’re not the person in charge.

3. We may fear our caree’s reaction if someone else provides care. (Read Balancing the Happiness Scale for a perspective which may help.)

4. We may fear a lack of control. Caregiving spins so much out of control for us; if we can control the care provided by being the one who provides care, we think we will feel better. (Read Simplify: Use No as an Agent to Prioritize and Reassess.)

5. We may fear involving others in our place of pain. Caregiving can be a very painful place; we may want to protect others from the experience that often can be just too difficult.

We also spoke about the power of not only speaking our fears but of communicating our fears with others. In our comments section, feel free to express the fear that may stop you from asking for help. There’s a reason for our fears–but there’s no reason to be powerless to them. Whatever your fear, we understand!

Resources

• Self-Care Sensibilities

• Finding the Right Words for the Help You Need

• Ask Denise: Do I Have the Energy?

Related Articles

• Stopping the Shoulding (caregiving.com)

• Diffusing Faulty Family Members (caregiving.com)

Sheri shared great information, including:

• The difference between budgeting and planning; budgeting is about the “right now”; planning is about the thinking ahead.

• Your budget consists of three categories: What goes out (expenses), what comes in (income) and resources (access to other assets if additional income is needed).

• Set aside a cushion, about 10% of the budget, to use in emergencies.

• Work your budget; check monthly to see how your actual versus your planned compares monthly and yearly.

We’d love to know: How do you manage your caregiving budget?

Related Articles

• Keeping Organized in the Game of Insurance (caregiving.com)
• Five Biggest Medical Bill Mistakes to Avoid (caregiving.com)
• We’ve Launched Caregiving Deals! (caregiving.com)
• Spring Cleaning: Taking Out the Good Money Habits (caregiving.com)

I think we’re in for it this weekend. When you’re not out shoveling, you find yourself inside staring at your four walls and your care recipient. Or, you may be staring at your phone, hoping your care recipient will be okay.

We’ve got some articles to help you weather the storm:

• Getting Help to Your Care Recipient When Bad Weather Gets in the Way

• When Housebound, Make In-House Activities Work for You

• Stay Home: Resources to Get a Break Right Where You Are

• These Four Walls

• Some Days… When the Bad Outnumber the Good

And, let us know: How do you weather your storms?

My brother-in-law suffered a stroke. The doctor said he was bleeding into the brain. After extensive Intensive Care at a Stroke Center, he is now in Rehab. We have been told that he will be there for about 6 weeks…..he seems to be showing improvement already, but the doctor indicates he will need “Assisted Living” for the rest of his life. He is presently 77 years young.

He is my husband’s only living sibling and we are wrestling with the problem of his being placed in an “Assisted Living Facility”, which I don’t think is the right thing for him. We are considering converting our garage into an apartment for him, where he will have privacy and independence, yet easy access to us, should he need it. At this point we are not sure how many of his facilities he will regain, although he seems to be quite alert.

Is this a bad idea and are we acting emotionally, without the proper regard for the care he will need?

I appreciate any feedback you could give me.

Hello,

I am sorry to hear about your brother-in-law. I hope he continues to improve in rehab.

I think it’s a good idea to pursue the possibility of converting your garage. You have six weeks to determine which living solution will work best for all of you: Use the six weeks to research your options. Because he is in rehab, ask the staff for feedback on having your brother-in-law live in your converted garage. Ask them how you can create an apartment that will best meet his needs. Can they suggest contractors/remodelers that can create such an environment? (You also can search for home remodelers in our directory.) How much assistance with personal care will your brother-in-law need in the morning and throughout the day? Do you feel comfortable providing assistance? Which agencies/programs/services can help out?

Some questions for you and your husband to consider: How much time during the day and evening can you be available to help? Can you and your husband be available when needed? How will this living situation affect your lifestyle? Do you feel okay with any sacrifices you’ll have to make? Will other family members/friends help? Will you be able to make arrangements so you’ll be able to take regular vacations (taking regular vacations is critical to your well-being)?

Persons who have suffered a stroke may experience tremendous personality changes. Ask the staff for input on your brother-in-law’s emotional needs. Do they feel that you can manage these needs? Would he do well living near-by, but not necessarily with someone?

And, involve your brother-in-law, as much as possible, in the decision-making process. Where would he like to live? What are his concerns and worries?

Because you always want to research all options, check out assisted living facilities in your area. (Our directory also includes assisted living facilities.) Are there any that you like? That are convenient for regular visits? You’ll want to know about other housing options, even if your brother-in-law moves into the converted garage. Emergencies arise and you want to ensure that your brother-in-law receives the care he needs in any crisis.

Be sure to ask, and answer, all the “What if?” questions. What if your brother-in-law moves into the apartment and requires more care than you envisioned? What if, for whatever reason, the living situation just doesn’t seem to be working? In these situations, what will your next steps be?

Remember that you can modify any decision that you make. And, be sure to keep the lines of communication open between you, your husband and your brother-in-law. You’ll all have to work together to make living together work. But, you have an opportunity to spend some quality time together. I think it’s great that you’re pursuing making this opportunity a possibility.

Whatever your decision, your brother-in-law is very lucky to have you!

Let me know what happens!

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.

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My grandfather had two heart attacks after fives years of angina and a previous heart attack within that five year period. He is going to be having a double by-pass very soon. He and my grandmother are in their 80′s and live alone in a little two-story house. Two of my aunts live near my grandparents and my third aunt  lives in the next state. My father lives across the country near my sister. Of my three aunts only one is really able to physically help, but when she offers, my grandparents refuse convincingly and she rescinds. My father is unable to leave his home due to restrictions of a new job. This leaves my sister and I.

Both my sister and I are willingly and able to move to my grandparents to help them through the recovery period of the bypass. My sister is able to come for the first month to assist me, because it  would be the most difficult time. My sister and I have lived with my grandparents for years before and know the ropes, but we are being thwarted by all members of the family minus my Father.

A prescription  of peace and quiet was given to my grandparents as part of the post-operative care. It now seems as though my aunts are rallying behind this like a battle cry to keep me and my sister at bay, also obviously because of their grave concern for my grandparents. They have swayed my grandparents to be of like mind. My grandparents also reject mine and my sisters help on the basis that our giving care to them would hinder our lives. Though we both embrace the chance to help two people we love so dearly, I would have to post-pone college for a few months, and my sister would be away from her two young children for a month. However the only people who are fazed by these “setbacks ” are my grandparents. My sister and I are more concerned with the safety and happiness of my grandparents. On a selfish note, it would be sublime for the four of us to live together again, even under these dreary and potentially short-lived conditions.

So now to the core of our problem, how do we convince a stubborn man and three emotional women that having capable hands at close range is not a bad thing? How can we make our relatives see that us being there will not equal a non-stop twenty-something party, but two truly concerned people looking after family members who could really use the help? Our grandparents do dote on me and my sister, and us upon them, but we both understand the gravity of this situation, yet we are still being treated like the young children we once were. How can we make them view us as adults?

We are capable of tending to any at home medical care, cooking, cleaning and driving, which is very important because my grandfather will be incapacitated and my grandmother has not driven in years. (I don’t want to see them isolated.) I also understand that there may be some resentment aimed at me and my sister for intervening where no one else has.

So how do we show we are not trying raise ourselves higher than our aunts, that we just want to help, and that in fact we will need our aunts help to be successful! There are so many emotions running rampant right now and with everyone scattered across the country, short of a conference call, a family meeting is unlikely. We are both very concerned about broaching the topic with my stubborn grandfather because of his fragile condition and we are running out of options in a dire situation.  Any advice you have to give regarding my families situation would be great and appreciated,

Thank you for your time,
Sincerely,
Concerned Granddaughter

Hello Granddaughter,

My suggestion: I think you are wise to recognize your grandparents may need more help than they realize. I think it’s okay to make a decision to go. Call your grandparents and let them know you can’t live with yourselves if you don’t come and help. Let them know what day you plan to arrive, that you’ll make arrangements for transport from the airport to their home. Let them know you’ll call when you arrive and are on your way. Let them know you can organize your sleeping space when you arrive.

Then, let them know you’ll call them tomorrow to work together to create a game plan on how you can best help them. Be clear in your goal: You want to help and will stay as long as your help is needed. Be calm as you listen to your grandparents’ response to your decision to come and help. But, be politely firm: You understand that they are okay on their own. You just feel it’s really important to come and be available to help.

After telling your grandparents you’ll be coming to help, call your aunts. Tell them what you told your grandparents: You can’t live with yourselves if you don’t come to help. Your goal is to help your grandparents and your purpose is to work effectively with everyone to make this visit work. Again, be polite but firm.

Then, start a dialogue, which can take place over a series of phone calls, for your game plan about “house rules.” A few house rules may be:

1. Meetings. You meet regularly with your grandparents and aunts (your father can join the meeting over the phone) to review how things are going. What’s working? What needs adjusting? Everyone should have an opportunity to speak their peace and everyone should commit to listening with an open mind. The true commitment from everyone must be to work together to make your temporary stay work.

2. Visit Reviews. Come to an agreement with your grandparents about how long your stay will last. Maybe you’ll agree to stay for at least one week after his return from the hospital. Then, you’ll review the next week’s stay during your regular family meetings and so on.

3. Assignments. Perhaps your grandmother will want to complete certain tasks for your grandfather. She may like to view you both as her back-up. Or, perhaps, she’d like you two to take over during the afternoons so she can nap or run errands. It’s important to be clear about who does what. It’s also important to be flexible as to who does what. And, it’s critical that someone is a designated back-up. Volunteer to grocery shop, pick up prescriptions, make “library runs” for books and videos, clean the house, cook, etc.

4. Meetings with Health Care Professionals. My suggestion would be for both of you to be involved in any meetings with health care professionals. Your role would be to take notes, ask questions, and clarify the information. This is a really important role for both of you.

5. You and your sister should also have your own House Rules. If your sister finds that she misses her children too much to stay beyond a week, then be okay with that decision. You both should be clear about your expectations of each other and your willingness to be flexible for each other.

My last suggestion would be for both of you to bring a journal with you and write about your visit with your grandparents. And, when you can during your visit, ask your grandparents about their lives–their childhoods, how they met and fell in love, their best times, their worst times, their memories during WWII, the Depression, Kennedy’s assassination, etc. Be sure to write down the stories they tell you.

You and your sister are embarking on a very special trip. Let me know what happens!

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.

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.)

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–Will: Experts recommend updating your will every three years. Consider: Are beneficiaries still living? Does the will reflect the correct distribution of all assets?

–Durable powers of attorney for health care and finances: Have you or your care recipient moved to a new state? If you have, check with your attorney to ensure the POA will be recognized in the new state. And, be sure your POA gives you the power you need. For instance, if you live in Illinois and your care recipient lives in Florida, the attorney may recommend you have two POAs—one for each state.

–Long-term care insurance. Has your care recipient’s care needs increased? Check your care recipient’s long-term care insurance policy to ensure your care recipient is receiving all the covered benefits.

–Investments. Are your care recipient’s investments still appropriate, given your care recipient’s age and care needs? Are your investments still working for you?

–Caregiving mission statement: Are your goals still on track?

–Your back-up plans. Do your contingency plans still work, based on your care recipient’s current care needs?

Keeping paperwork up-to-date helps you stay on target in your caregiving role.

Finally, I’m going on vacation! I’ll be gone for two weeks in September. My sister will stay at the house and take care of my mom.

Here’s my problem: How in the world do I tell my sister what I do every day to take care of my mom?

Hello,

Good for you! It’s wonderful you’ll be able to take a well-deserved vacation.

Because you do so much, it can seem daunting to communicate so much, not only about what you do, but what your care recipient likes, dislikes, tolerates, can’t tolerate. It’s also hard to explain how you know how to manage your care recipient on a bad day–because it seems that you just know.

Some suggestions:

• I encourage family caregivers to keep two journals: One for their eyes only, about their experiences; the other, about their care recipients and their medical conditions. If you don’t already keep journals, now’s a good time to start. In particular, a journal about your care recipient will really be handy for your sister. In this second journal, document your care recipient’s day: Meals, disagreements, hands-on care, challenges, moods, activities, and conversations. A good time to update this journal during the day is after every meal and after personal care (morning and night). Your sister can read your journal entries well before she takes over; she’ll have time to ask questions or clarify information.

• Create a calendar that reflects your day’s routine: Bedtimes, medications, naps, meals, etc.

• Have your sister shadow you for a period of three days. Do this about two or three weeks before you’re set to leave.

• A week or so after the shadowing, have your sister stay with you and your mom for a weekend. This time, though, she is the primary family caregiver. Schedule activities for yourself outside the house (and alone) so your mom and sister can start to develop their own routine. You’ll be close by, though, in case of an emergency.

• Allow your sister to ask any “What if” questions she can think of–no matter how crazy or unrealistic they may be. One question I like to ask when I start a new job is: What’s the worst mistake I can make? Or, What’s the worst that can happen? If I know the worst that can happen and have some solutions–just in case–then I know I’ll be okay.

• Develop a back-up plan for your sister so that she’ll have options if she becomes ill or encounters other emergencies. This article about contingency plans may help.

• Be open to mistakes–from both of you. You always can re-group and move on. Keep your sense of humor and perspective and you’ll be okay.

• You can check with your local Area Agency on Aging and Red Cross to see if the agencies have any upcoming training classes for family caregivers. Additional training for your sister would be great.

The goal is increase everyone’s comfort level so that all three of you feel okay during your vacation. You also want to allow your sister and your mom the freedom to develop their own routines and habits. If it’s different than how you would do it, that’s okay!

Have fun!

But, there will be times when you can’t. You may have the flu, or be called out-of-town unexpectedly, or need to devote your time to another family crisis. Or, your home health aide, who you employ, is sick, but you need to be at work for an important meeting. Who will step in on your behalf?

Developing a contingency plan for just this reason will help you manage the crisis within the crisis. We’ve developed a small guide (below) to help you develop your plan. Your guide will contain contact names and phone numbers of organizations and persons who can help if you need to temporarily take a break from your role as caregiver:

Home Health Agency:

Social Service Agency:

Adult Day Services Agency:

Family Members/Friends/Neighbors:

Assisted Living Facility:

Nursing Home:

House of Worship Resources:

Others:

We’ve listed a variety of organizations that can help in a pinch. For instance, assisted living facilities and nursing homes provide short-term stays, some as short as a weekend. Contact the facilities in your area to learn about their respite policies. And, check home health agencies in your community to learn which would be appropriate as back-up to your privately-employed aide.

If you currently do not use any of these services, then research your options now: Understand which home health agency is best for you and your care recipient; which adult day center provides the most appropriate care for your care recipient; which social service agency offers programs and services that you can use.

Your contingency plan ensures your care recipient receives quality care in your absence–and you can take the time you need.