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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 12/20/11

My mom, 81, has been staying in an assisted living place off and on for a year, due to several surgeries and physical therapies.  She was staying with my husband and me between surgeries.  The state has been paying for most of her expenses for the last four months.  That is coming to an end because she still owns a house that has been reverse mortgaged twice.
 
She does not want to live with us because she does not like the big city and wants to move back home.  She is in need of 24/7 care.  I have brothers in the coastal town where her home is, but they do not want to be her caregiver unless they are able to move in with her and have her support them, plus being paid. They have not worked for years and their caregiving is not the same as mine.
  
My husband and I want her to live with us.  She has her own furnished room and private bathroom. I will be retiring the first of the year, so I could care for her.  Her house is 120 miles away, so itís not easy to drive back and forth on a regular basis.
 
She has a lot of medical conditions and visits the doctors regularly.  My brothers in the past did not go in to see the doctors with mom.  She gets confused and doesnít remember what the doctors say to her, so itís imperative that someone accompany her.
 
Mom's house needs a lot of work before she can safely live there--wiring, floor rot, and plumbing problems. The house needs to be liquidated and on the market, we all know; but after living there 40 years, Mom has a lot of stuff and wants top dollar if we sell her things.
 
Do you have any suggestions for me or know where I can turn?  I have not joined a caregiving group hereÖperhaps thatís where I should start.
 
Sandy

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Name: Susan Balla
Location: Connecticut
Date: 12/22/2011
Time: 08:22 PM

Comments

Sandy, first of all thank you for letting us into your life. You need to join a support group so you can have people there to lift you up when things are not going well. You need to sit down with your mom and explain to her that her house is just to dangerous to go back to and live in. Give your mom suggestions that are safer and let her give you her decision. If possible try to get her to see that maybe it might be better being with you but have an independant life. Your mom is seeing that you are becoming her parent and she is the child. It is very difficult for parents who raised their children to turn around and say to their child I need help. Respect her. I know because I have been there. I am also in the medical profession that deals with the elderly and their families. Good luck.


Name: Zuzu
Location: Greensboro NC
Date: 12/20/2011
Time: 08:43 PM

Comments

Do find a support group for dementia caregivers or caregivers in general. Hearing how others have dealt with similar problems have dealt with these issues is extremely helpful. They may be able to point you to local and state governmental programs that can give you aid to make the transition from being independent to cared for smoother for your mom. You don't say what state you live in and it's not clear if your mom is in the assisted living facilities under Medicare rehab care or under the state Medicaid program. It's easy to confuse the two. Under state Medicaid her house does not have to be sold before she qualifies, but the rules differ by state. The fact that she's used money from the equity already by reverse mortgage complicates the issue. It doesn't make much sense, it seems, to make so many repairs to a house that's got no equity, will have to be sold to reimburse the state for Medicaid costs and she won't be able to live in for a very long time, if at all, so that she can return to it for a few months. The state Medicaid shouldn't stop paying for her care because she still has the home. The qualification should be based on her assets in the bank, IRAs, CDs, investments and such. Often the home does not need to be sold right away, being delayed until after she passes so that your family can concentrate on her care for the time being. You should go to her county adult social services office and talk to a social worker there about her situation and find out what they suggest. They generally give good advice and unless she has lots of assets to protect are far less expensive than an elder care lawyer. The two most difficult things to deal with are your mother's and your high expectations. She wants to live at home with all her stuff as if nothing has changed in her life. You want her to have excellent care that you can control without making her upset. You may not be able to make everyone happy, but you may be able to make decisions that move things along so that she is safe, she has good basic care, and it doesn't ruin any of you financially. You also need a solution that doesn't end your marriage or destroy your family. Understand that your mom may not have a good grasp on the reality of the situation, because she doesn't know that she's not going to get top dollar for her stuff that needs to be sold (you may not have the time to deal with disposing of it in a hurry; you may not find buyers in the time frame you have for getting rid of the stuff; the economy has changed the price people will pay for used goods); and driving 120 miles each way to handle the cleaning, going through, shredding, sorting, selling, moving, yard work, house selling will get really old really fast. REALLY IT WILL! You shouldn't expect your brothers to change their past behavior suddenly. You will probably be disappointed with the outcome. As you stated, they won't care for her like you have, and you will always be dissatisfied with what they do for her. That will cause family conflict that will only lead to more care problems than you already have. You and your husband have already cared for your mom some in your own home and you say you'd like to continue doing that. Maybe you should consider telling her that "right after she's released from the assisted living she should stay with you for the first month while she regains some strength" (this technique is called "therapeutic fibbing"). Then, you start getting rid of her stuff and her home and she stays with you. "Well, Mom, the doctor thinks you should stay with us right now because it's not safe for you to be alone." "The doctor said that it's better for you to be with us for the time being." Have your brothers help by taking care of cleaning out her home and getting rid of her stuff and selling the house. That way they help with stuff they can handle and you do the caregiving without distraction. You need to care for her in a situation that's comfortable and convenient for you. She may not be totally thrilled with it at first but over time your mom will adjust to being with you and your husband, and to city life. If she's beginning to forget things and needs more and more assistance, she'll not be going too far from your place anyway. BUT, you SHOULD find a support group, because what will come shortly are decisions that will be more difficult to make. You may find that having your mom in your home every day all day, month after month, becomes a problem, especially if she has dementia or needs a lot of assistance with daily personal care. Until you have done caregiving it's difficult to understand just how exhausting it is physically, financially, emotionally and spiritually. A support group can give you a place to express your feelings, doubts, gain knowledge of choices you may have and encouragement about decisions you may have to make. You and your husband may be able to stay with you until she passes, but you can't plan for everything that may happen, so having her with you for awhile will give you time to start planning ahead in case you have to place her in an skilled living facility. You will be able to find out from Social Services what has to be done to to get her FL2 forms ready for correct placement; visit different SNFs and compare their ratings (Medicare.gov has a really good facility rating system for every area of the country); find out which facilities allow her to stay as she moves from private pay to Medicaid pay; check facilities for the ones that offer the type of activities she will enjoy, the distance from your home, the closeness to her doctors; if they will hold her space if she has to go to the hospital for treatment and how they bill for the "bed holds"; learn about any county, city, medical related, faith based, VA financial assistance (the new Veteran's site is VA Caregiver Support: Caring for those Who Care Website, and if she or her husband had time in the service you should check with a VA benefits person to find out if she is eligible for VA help, then call another VA person, then another). You may also want to consider having someone come into your home to help you care for her to make things easier for you. If having a nighttime sitter will allow you to get better rest, then get one so you can be a better daytime caregiver. Maybe you can give room and board to a nursing student in return for caregiving hours or offer free rent to an older single woman who is willing to help with her care. There may be members in your church or a local high school/college students who donate free aide assistance as part of a community volunteer program. Creative caregiving can really help you work out difficult situations in a positive way. Your family, especially you and your husband, have a lot ahead of you in caring for your mom. It's admirable to consider giving her care in your home. Make sure you both keep talking openly about the issues, that you explore all options, and that you recognize when you need additional help. Most caregiving in the country is given by family members, and there's little doubt that will make you feel like you've done everything you can to keep your mom happy and healthy.


Name: Theresa McCarty
Location: St. Louis MO
Date: 12/20/2011
Time: 01:51 PM

Comments

I have a friend who recently has been faced with a similar situation as yours.....first she had an auction of all the large items in her mothers home. This got rid of lots of "stuff". Secondly she had a huge yard sale, and got rid of a good deal of the rest, pricing things moderately to get rid of them....with the money from these sales she is able to prepare the house for sale, and pay for care for her mother. Hope this helps.


Name: Carol
Location: Tampa
Date: 12/20/2011
Time: 10:38 AM

Comments

Sandy yes joining a caregiving group will be a great start. The issue is if your mother needs 24/7 care she will no longer be able to live alone even if that is what she would like. This will not be safe therfore, you may have to make the decision and limit her option of returning to an unsafe situation. Unless she is able to hire private pay 24hr help returning home without proper supervision will not have a good out come.


Name: Lori Harasta
Location: Ventura, CA
Date: 12/20/2011
Time: 09:10 AM

Comments

That's a tough situation, and you are a wonderful daughter to care so much. I know how stressful it is, I help place people in assisted living facilities, and I've heard many stories. Suggestions: sounds like money is an issue. If she has a life insurance policy, it can be used as a reverse mortgage. If she or her husband served in the military, there is financial assistance available for dependents. Go to www.va.gov or call your local veterans' assistance office. Contact your Area Agency on Aging. They will have information on in-home assistance for little or no cost for a few hours per day or week. In our area, we have In Home Support Services. You might try googling it. I would work on helping your mom whittle down her "stuff". There are services out there that will help you do that. Or, you can do it yourself by taking pictures of the items and making a photo album, then distributing her treasures to family members. Another thing I do is videotape autobiographies. Imagine having your mom's memories captured for you and your family on video tape. You can use her treasures to conjur up fond memories, or ask questions about her early childhood, teens, adult life, etc. You will find that some periods of her life she will love to reminisce about if you pre-interview before videotaping. You can google to see if there's a professional offering the service in your area. Be careful about going on line and giving your name, contact information, and any information about your mom. There are placement agencies that "own" you--you become their client whether or not you wish to work with them. These tend to be the agencies that do volume and little personalized service. Once you're signed up with the big agency, if you go to one that would treat you with TLC, they will not be able to be paid for their services, which are paid by the facility where Mom is eventually placed. (The services to the client are FREE.) The big companies will bill the facility simply for forwarding the client's name and a few details about their care needs, and not follow up with you to ensure satisfaction. You will not be able to benefit from a care coordinator who has toured and contracts only with the best facilities, does in-depth interviews with clients, and calls facilities to ensure mental, physical, social, and financial needs are met, as well as availability at the site, all of which save loved ones much time and stress. Feel free to contact me for a personal chat. jllnh@hotmail.com. Best wishes, Lori


Name: Chris
Location: Toledo, OH
Date: 12/20/2011
Time: 07:24 AM

Comments

Sandy, My best advice is to sit down with your mother and discuss what options are open to her. Some options will not be as good as others. The more she is a part of the decision-making the more she will buy into whatever is decided. When the decision involves giving up the home, it makes it very difficult. Try to get her to remember why she moved into the home and if it is still working to meet her needs. That is what a home should do. Also, if she does have to move away from that home, she will be able to take all the good memories with her. The main thing for you is that she knows you will be there for her and be supportive.


Name: Maggie
Location: Shawnee, OK
Date: 12/20/2011
Time: 06:14 AM

Comments

My mother has had a similar situation. After many surgeries, she just wasn't able to take care of herself. Finding care 24/7 to provide medications and for safety reasons we just didn't let her go back home. We found a nursing home near me in Shawnee that provided all we needed. Unfortunately, my sister lives further away and doesn't drive up much. Thus this leaves in charge of all mother's needs. At least I can visit her often and see she is getting the proper care. Good luck.


Name:
Location: Ohio
Date: 12/20/2011
Time: 06:05 AM

Comments

You will have to bring the Doctor into this and have him tell your Mom that she can no longer live alone in a house that is NOT SAFE to live in. and that her house no longer is qualified to have a reverse mortgage on it..You might have to pack up everything that she wants to keep and put it in storage and donate the rest to Charity and get rid of the house. stress to her that because of the Repairs needed to the house it would cost too much to do the repairs out of her funds. And from the way you mentioned the rest of the family sounds like you won't get any help from them... If she did move back into her home she would have to hire from a reliable agency 24/7 CAREGIVERS and that would cost at the minimum $20 per hour. Like you I think she would have better Care at your Home with some of her personal Things in her Private Bedroom and bath. You could still hire agency Caregivers to be at your Home several hours a week or even a day so you would be sure she had someone there with her as a Companion while you are at work or out with friends. See if there is a Comfort Keeper Office near you... You can look them up at: www.comfortkeepers.com and check them out..They do 24/7 care and the workers have had a background check etc.. Good Luck


Name:
Location:
Date: 12/20/2011
Time: 05:23 AM

Comments

YES join a support group. and now the hard part. everyone needs to get realistic. mom isn't going to get "top dollar". Mom might be better off in an assisted living or nursing home situation. TALK TO OTHER CAREGIVERS FIRST before you take it on. It is not easy at all and you put your own health at risk.


 







 

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