Ask an Expert: What About My Sister?

Denise

Ask an Expert: What About My Sister?

Denise
question-mark2(Editor's Note: As you know, we celebrated the 17th birthday of Caregiving.com earlier this month. In looking back at how the website has changed over the years, I uncovered many past Ask Denise columns. I'll re-run these columns regularly as I think you'll enjoy them. This column originally appeared on Caregiving.com on April 3, 2000.)

Dear Denise,

My Mom (74 years old) has had M.S. for many years. For the last 20 years or so she has had to use a wheelchair. In 1991, Dad died, and Mom was able to get along by herself. In 1994, Mom's disease worsened, and she needed help with some of her daily routines. Mom moved in with my sister and her husband, who lived close by. I (her son) live in Florida, 1,100 miles away, so it was never mentioned that she would relocate with me and my family.

In 1995, my sister requested I help care for Mom, since her husband had recent cancer, and she wanted to spend time with him. I moved up with Mom in her house, and was able to stay there for six months, until my employer requested I return to Florida. Mom then went back to stay with my sister. In 1996, Mom gave my sister $20,000 for helping her. Later that year she also deeded her house over, since she knew nothing of my sister's financial situation, and wanted to be sure that she always had a roof over her head. My sister's husband died in 1998, their joint property sold, and Mom and sister moved into Mom's house.

Since late 1998, my sister has been dating a man whom Mom and I do not trust. Since meeting him, everyone has seen a drastic change in my sister. She has become greedy and self centered. Mom, fearing they would marry, and potentially kick her out of her house, asked that my sister give the house back. Mom found out that my sister didn't need the house, or anything else, since her deceased husband left her financially secure. Also, she wants to have both of her children inherit her assets, not just one.

My sister refused to give the house back, since she didn't want the "nursing homes" to get it. Also, she said she plans to live in it during the summers and had no intention of sharing it with me, her brother, upon Mom's death. She said she was "entitled to it" for all the years she cared for Mom. She thinks I could have done more towards her care, and resents the fact that she was alone in this (never mind the six months I was able to help, or the fact that I live 1,100,100 miles away).

Last month Mom's health went downhill, just after my sister married and moved two hours away. Mom spent the time in the hospital and a local nursing home. This week she was transferred to a nursing home closer to my sister. My sister now has "power of attorney". With her track record concerning the house, I'm concerned that Mom's assets won't really be used exclusively for her care, and that upon her death, the assets won't be split equally as directed in Mom's will.

I am hurt by my sister's actions toward myself and her mother. I don't see how any child is "entitled" to anything from our parents except their love. I could use some sound advice.

--Sunshine Son

Dear Sunshine,

Your letter is interesting to me because typically I receive letters from persons like your sister, who complain about persons like you. Persons like your sister, the primary family caregiver, often wish for the life of someone like you, the long-distance sibling. Distance does take away some of the pressure and responsibility of the caregiving experience.

It sounds like your sister has gone through quite a lot in the past few years; she's had many worries and many sad moments. It sounds like now, in reaction to those difficult times, she has taken the attitude of "All for One, and All for Me!" This could be just a part of her healing process. It's difficult to really understand the pain she has felt. This could be her way of running away from the pain--although I think she will realize in time that the pain just runs with her. She can't outrun it.

The hardest part of any relationship, particularly with our siblings, is recognizing what we can control. We can only control our part of the relationship, meaning that we share our feelings in honest, mature ways, that we act in good and kind ways (although we all have our bad moments). How others react to our behavior, our words, our good intentions is beyond our control.

What your sister has done is beyond your control (and your mother's). You can encourage her to work with you to keep your mother's well-being and health a top priority. You can also see a lawyer to determine if the power of attorney can be reversed. The lawyer can also advise you of your options in case your sister withholds some of the money for your mother's care. Having sound legal advice, even if it never becomes more than just advice, will ensure your mother receives the care she needs.

Let forgiveness live in your heart toward your sister. Even in ways that can seem so misdirected, we all do try to do our best. You know you have!

Good luck!

Dear Denise,

My name is Mary. I have taken care of my father since 1990. I have juggled school, work, raising three kids, taking care of a husband, and caring for my dad during that time. I have three sisters who, with the exception of one, live reasonably close to me.

My question is: How do I cope with the resentment I feel towards my siblings? I love my father, and I have accepted the fact that he depends on me for practically everything. But, I still have children at home that need my attention as well. They have certain needs, my husband has certain needs, and I myself have certain needs. Some of them get met, others don't.

My sisters have all raised their families. It's like Dad's out of sight and out of mind with them. When I try to explain that I need a break, they look at me with a facial expression that says, Fine, take a break, but take Dad with you.

Like I said, how do I cope with the resentment I feel toward them? I would appreciate any insights you might be able to give me on this subject. I'm so glad that your group is out there. I really feel like I'm all alone in this matter. It's nice to know that I'm not.

--Mary

Dear Mary,

Your question is one I hear all the time! You are comfortable providing care for your father; unfortunately, it seems your sisters have some unresolved issues or feelings that prohibit them from becoming involved. The hard part is that their uninvolvement negatively impacts you--and your family.

A few suggestions for you:

--Not everyone is cut out for hands-on care or very in-depth, ongoing caregiving. However, there are others ways to be a caregiver. For instance, can your sisters provide financial assistance, so you can hire in-home care? Can they make phone calls to find out about services and programs in your area that can provide assistance for you and your father?

--Be clear about what you need. For instance, you may decide you need a break from caregiving two afternoons each week. Ask your sisters: How can they help you meet that goal?

--If your sisters refuse to help, do not give up on finding help. Look to other resources, such as your church or synagogue, adult day centers, home care agencies, social service agencies. Help is out there, it may not be easy to find, but don't give up!

--Allow your sisters to make their own choices--and live with the consequences. You have done so much for your father and, as a result, have developed a relationship with him that your sisters never will have. Who will have feelings of guilt and regret after he's gone? I don't believe you will.

Finally, consider joining our online caregiving support groups.

Be sure to take time for yourself on a regular basis. No one can be a caregiver 24 hours a day, seven days a week.

Dear Denise,

My friend's mother has Parkinson's disease. Her two children have been caring for her for years.

Now, my friend feels pulled about what is the best her mother. Should she admit her to a nursing home? She wonders how and when she will know that it's the right time for nursing home placement?

--Concerned Friends

Dear Friends,

This is such a difficult situation!

If your friend feels she is being pulled in too many directions, then the time for a change may be coming closer. It does sound like your friend needs to take a break, needs some time to herself to get a perspective on the situation. Can she explore respite care options, i.e., admitting her mother to an assisted living facility for a one-week stay? Or, hiring in-home caregivers to stay with her mother while she takes some time off?

Some questions for your friend to consider:

--Realistically, how much longer can she provide care in at home? And, is the care that her mother needs able to be provided at home?

--Is her mother safe at home? Are there any potential problems that your friend can foresee that might threaten her mother's safety and well-being at home?

--How does your friend feel about providing care at home? Does this make her feel overwhelmed, tired, even like crying? These type of emotions would indicate that the experience is becoming too much. And, that's okay to have these emotions. It's her body's way of saying, "Hey, take care of me, too!"

--Would assistance from community services, such as home health aides, Meals on Wheels, volunteer friendly visitor programs, make a difference? Is your friend just trying to do much? How would she feel with some additional help?

The nursing home decision is a very difficult one to make and is a decision that evolves. I would suggest that your friend explore options in her community, including senior housing, such as nursing homes and assisted living facilities. She should be familiar with the facilities that best meet her mother's needs (and hers!), so that when the time comes, she feels good about her decision. In addition, she should keep her mother involved throughout the process; her opinion is critical.

Good luck!

Dear Denise,

I am a brand-new caregiver for my mother, who has a rather unusual situation. In August, she developed a severe case of post-herpetic neuralgia after shingles (an extremely painful condition) that incapacitated her to the point that she had to leave Alabama and home and live with me temporarily.

She really is fairly young to be so debilitated (67) and has previously been living alone and working. But since this has happened she stopped working, driving and doing much of anything. After months of my trying desperately to find some treatment for a very intractable condition and months of physical therapy, she is finally fair. However, she literally spends all of her time watching tv or sleeping--I feel she is depressed, because this is a huge contrast to a previously very active life.

Unfortunately, she feels she must go back to work full-time in January as a college professor--I don't feel she is up to it, and is in denial, but she will go back. I'm afraid I'm about to become a long-distance caregiver--or that she will have to come back here after having to suffer some type of serious setback. I can't say that I am a perfect angel and want her to live with me--she is very hard to get along with, and I only got married five months ago, but I am worried.

My fear is that she can't handle tasks of daily living but refuses to recognize or admit it or take care of herself correctly. Right before I brought her here, she was not eating, was having bad falls due to being overmedicated with narcotics for the pain and nearly had an accident because she was trying to drive doubled over in pain. Assisted living would probably be the best option for her, but I know she will not go for it.

I was wondering if you could advise me about being a long-distance caregiver, or about resources or information about caring for someone who may have depressive symptoms. I am really concerned that she hides her symptoms and gets into bad health states before letting me know anything.

Unfortunately there are no relatives living near her, and due to her rather anti-social nature, she only has one friend who has been strained to capacity helping her out. My guess is I'll have to hire some type of homemaker assistance, but I'm not sure how to go about that.

Sincerely,

Lisa

Dear Lisa,

I think you are very smart and very perceptive to realize the problems that may occur for you and your mother. Unfortunately, the only person who can truly prevent the crises that you foresee is your mother. And, since she has made her choice--going back home, going back to her life--your only choice is to be prepared and stay informed.

My first suggestion would be to familiarize yourself with the services in your mother's area. Call the ElderCare Locator to learn more about services: 800-677-1116. Then, gather the information you'll need about services that you think your mother will use in the future. For instance, call home health agencies in the area to find out their costs, their ability to provide services in a pinch (i.e., in an emergency) and the type of services they offer. Which agency do you feel would be able to help when/if the need arises? Be sure to explain your circumstance so the agency understands how important their staff would be to you and your mother's health. Using a home health agency might be a way for you to monitor your mother's condition; the staff would be your eyes and ears.

Can you think of other "eyes and ears" you can use for your mother? For instance, a minister in a church? A fellow professor at school? A neighbor? They wouldn't necessarily have to be involved daily, or even weekly. But, if they could check on your mother regularly and then let you know if they see problems or changes, then that would be a great help to you.

I also think you might consider visiting your mother every-other-weekend (or a timeframe that you find comfortable) when she first moves home. Your immediate involvement will help you understand what her major obstacles will be--and if the services in the community can help her.

Helping your mom means doing what's best for you and her. Often, having a parent move in with you is not what's best for both of you. You're a wise soul to realize that now--rather than creating a stressful, unhealthy situation for both of you.

Good luck!

Dear Denise,

We just took my dad to the doctor's today. He was just diagnosed with Alzheimer's disease. He is going to be 82 on August 22. This is really hard for me to accept right now. Do you have any suggestions for me?

--Sue

Dear Sue,

This is a very difficult time for you, your father, your family. This is difficult news to accept; I believe it will take a while for it to sink in. This is absolutely normal! While you should give yourself time to adjust to the news, you should also remember not to turn your back on the news; it's critical that you remember that there is help in the community for your father, your family and yourself.

Have you contacted the local chapter of the Alzheimer's Association? You'll find the chapter to be an excellent resource. The chapter will have information about the disease, how to cope with the disease and about drugs that may be able to help your father. The association also sponsors support groups, something you might consider joining. It's so comforting to hear that others also felt numb after hearing the news of diagnosis, that they wondered if they were up to the job ahead, and that they wondered how this diagnosis would change their lives--and how would they face the fear of all the changes ahead???

I think you have to remember to take each day as it comes. Enjoy what you have today--the relationship with your father, the opportunity to be together. Remember that the diagnosis and the disease will never really change what's truly important--how much you love your father, and he, you. And, use each day to prepare for tomorrow, by learning all you can about the disease. Information is power.

Good luck to you and your family!

(Do you have a question you’d like me to answer? Just send me an email. If you or your caree are in a crisis, please call a health care professional immediately for assistance. I only provide general insights about general situations. Always consult your own lawyer, financial planner, health care professional and other professional advisors for advice specific to your situation.)

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