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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 - 12/07/10
My 85-year-old father and I are in a difficult position. My mother (84) has Crohn's disease and late-onset Alzheimer's. The combination of the two is devastating. We are constantly cleaning her and her surroundings.  She is down to 94 pounds. She is still lucid and knows most of what's going on, although she often forgets where she is.

How do we know when it is time to put her in a 24/7 facility? My father doesn't think she is ready for a nursing home. Two to three times a week, she attends an adult daycare. Her doctor thinks it would be easier on my dad if she were in a facility;he says she will need more care than one or two people can provide. The doctor and I am very concerned about the effect this is having on my father, who is fragile himself. I am with my folks for a month or two, but then I have to leave. They have long-term care insurance and have had aids come in. Please give me some guidance.





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Name: Susan Balla
Location: Connecticut
Date: 12/08/2010
Time: 06:40 PM


Hi El. If your father does not want his wife in a nursing home then I would say to have a live in aide. Prefereably a CNA. Being they have long term insurance it will cover an aide coming in. Try not to put your mom in an institution until the very end. She will not get the care that an aide will give her on a one on one senernio.

Name: Chris Gutierrez
Location: Pasadena, CA
Date: 12/07/2010
Time: 12:25 PM


Hello EL, I have helped to place all four of my grandparents (whom I was very fond of) into nursing homes and I know that it is not easy. My wife and I own two care homes in Pasadena and I also help families full-time to find the RIGHT home for their elderly loved ones. My analogy is that it is like putting our kids for the first time in school. We know that it is the right thing to do but it can be hard to let go. Most facilities offer a respite program and that may be a good approach with your father. Tell him that they can try out a facility to see if it is a good fit for her. There is always the option to bring her back home. Most facilities can charge by the day, week, month, etc. I hope this advice helps!

Date: 12/07/2010
Time: 11:09 AM


I have experienced both situations where my father went into a nursing home, and there was not a day that he didn't ask to go home until he died. I now run a home health care agency, and have made keeping Dementia patients in their homes my mission. You have to listen to your heart and Father. Doctors don't always have the right advise to give to people with this situation. Let's face it how often do you see a Doctor visit a home where he would have any insight to compare a nursing home care to in home care. A certified home health aide live-in is a lot less money than a month in a facility. Your Father can have the help he needs for your Mom until she goes on Hospice. Make calls, interview agencies, get all the information so you know your doing what's best for your Mother.

Name: Ohio
Date: 12/07/2010
Time: 10:32 AM


Better look in to the Long Term Care policy My mothers would only cover 4 hours of personal Care a day, regardless of her need for Transportation to Therapy and to the Doctors because she wasn't allowed to drive.. So what happens to the other 20 hours of the Day when she needs supervision...?? and you never can tell when the need for personal Care might needed during the day or night... Good Luck,,, but I think that a Nursing facility might be a good idea and you can go with your Dad to check them out... and maybe even get Mom settled... before you have to leave...

Name: Jane
Location: Kansas City
Date: 12/07/2010
Time: 08:52 AM


This is such a difficult decision to make. When I realized that my husband who has dementia needed more care than I could provide, I was so thankful for his foresight to purchase long term care insurance. The biggest deciding factor in my decision to place my husband was the answer to this question: am I keeping him home for his benefit or for mine? When I could answer that honestly, I found that it was my guilt over placing him in a nursing home that was actually causing me to give him inferior care. Once I realized that he would get better care at the facility in terms of being kept clean and dry, getting regular meals and having something interesting to do, I made the decision to place him. I am lucky to have found a very good facility. I don't presume to think that your situation is the same as mine. But I do think there are times when the idea of providing good care is tied to an old promise to keep someone home, or to a feeling of having failed or to the idea that we will look bad if we "give up" and place our loved one in a home. Each family must decide for themselves when it is time. But sometimes it take some hard exploration to uncover the barriers within us to letting others care for our family members. Good luck with this very tough time in your family's life.

Name: Annette
Location: Los Angeles
Date: 12/07/2010
Time: 08:29 AM


I would suggest you get 24/7 care in your parents home. It us possible to hire live in caregivers to help in your mother's care. If needed you can also get caregivers to work 12 hours shifts so there is someone with her twenty four hours.

Name: Kathy
Location: N.H.
Date: 12/07/2010
Time: 07:00 AM


Hi, This is so hard. My father just passed away in June after living with Alzheimer's for 11 years. My mother was his 24/7 caregiver and I was her back up. We did not want to put him in a nursing home but it got to the point where we were told to consider what it was doing to Mom. We were basically told we could lose Mom first if we didn't put Dad in a nursing home. She was so against this, then she had surgery with complications and tried to take care of him after and she just couldn't do it so she was the one who made the final decision. My heart goes out to you, this is so hard and I remember it like it was yesterday.Once in a nursing home she went up every day, often eating meals with him. That is also very tiring, especially emotionally because she hurt her so much to see him there but she knew he was safe there and she could see him everyday if she wanted.Good luck and my thoughts are with you!

Name: Dana
Location: Fairfax, VA
Date: 12/07/2010
Time: 06:50 AM


EL: Keeping your mother out a facility may in fact kill your father. If not when your mother is alive possibly not long after she is gone. In two years time I have seen this happen to three different couples in various age ranges amongst family and friends. The wife cared for the husband and she deteriorated over time. Within 6-12 months after his death she is then diagnosed with additional health issues and people just didn't see it coming. Your father can still visit your mother each day. There is the benefit of the long term care insurance which so many people do not have. If your mother didn't have the insurance then the cost of care in a facility would be astronomical. I have no doubt that you are continuing to struggle with the decision to place her in the facilty. I was fortunate to have the benefit of my FMLA leave to care for my husband more in the last 8 months of his life so that I wouldn't have to put him in a facility. But he and I were much younger. But I knew his death would come sooner than later. Your mothers situation could go on for years and the affect it will have on your father at his age could be way too much. Please look to placing her in a facility and then make arrangements for your father to go see her each day.

Name: Roxanna
Location: Champaign, IL
Date: 12/07/2010
Time: 06:49 AM


It is not when your mother is ready for the long-term care it is when the caregiver is ready. Hopefully, it will be before his health is severely affected.

Name: Jody
Location: Minnesota
Date: 12/07/2010
Time: 06:20 AM


There are so many wonderful care facilities that have assisted living and nursing home care connected. Perhaps they both should move. She to the nursing home area so she gets the 24/7 care that is needed. He could live at the assisted living area. They could be together as much as they want however he would not have the responsibility of all the care she needs. You also would know that she is being well cared for and the stress is off your Dad.

Date: 12/07/2010
Time: 06:17 AM


Hi EL, I am sorry you are struggling. There are resources out there to help. 1)Attend an Alzheimer's support group. You can find your local chapter at, 2)consider a health care advocate to conduct an overall assessment and work with you and your father to implement a comprehensive plan that will help you define when moving to another level of care is needed, caregiver stress and maximize your use of long term insurance coverage(most cover case management support costs). If you are located in PA, MD, VA or TN my company would be happy to assist you. You can visit our website at to learn more; or you can locate a Certified Geriatric Care Manager at Kind Regards, Patricia Kirkpatrick RN MJ CPHQ Founder, COO Advocacy Partners



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