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Senior Transitions

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Caregiver Challenges

Expert PhotoSue has worked in the geriatric healthcare field for over 20 years. A National Speaker, Sue utilizes her personal and professional experiences to educate and empower professionals on the work/life affects of caregiving. Her unique humor laced programs address significant issues affecting our fast-paced lives.

I am the sole care provider for my husband (age 67) who suffers from PTSD, Parkinson’s, multiple system atrophy and advanced dementia for 12 years. I am 62 and have gone through hip replacement and more without his even noticing. We have no living family except a daughter half the country away. People we have known over the years are reluctant to help in any way. I have every self-help contraption in the book. I have hired agencies. I use them when I have doctor appointments since he wanders. I take him out daily to the grocery, etc., for a change of scenery. Our only adult day care is beyond dreary—a line of wheelchairs. All assisted living in our area is far beyond our means. When he dies, I will get only 1/3 of pension. We “bought down” two years ago and have to again for funds. The office of aging and all the organizations that are recommended are for "low income" people. Our primary care is understanding of situation, but I have nearly cracked up twice. Do I just lose my mind like the rest of sole caregivers? 

Kathryn from VA

First, I want to thank you for having the courage to reach out. I can only imagine how overwhelming this all must be for you. You are in the situation that many caregivers find themselves in: you don’t have the funds to afford appropriate care in an assisted living, but you make too much money to qualify for support programs, which can make anyone feel like there are no answers or ways to get help. However; there are some options that I think would help you:

• It would be beneficial for you to connect with a Geriatric Care Manger to help you find resources and create a plan of care for your husband. You can find a qualified care manager in your area at http://www.caremanager.org. There is a fee to utilize this type of service, however it’s worth it to have professional support in moving forward.

• From your description of your husband’s health challenges, it may be time for you to look at transitioning your husband to a skilled nursing facility that accepts Medicaid. The Spousal Impoverishment Protection Act is a special rule for Medicaid patients. This applies to couples in which one spouse needs long-term nursing home care and the other does not. In cases such as this, a review of income and assets is conducted to determine how much the healthy spouse gets to keep and how much is taken by Medicaid to cover costs of long-term care. For more information on the guidelines visit http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Financing-and-Reimbursement/Downloads/SSI-SpouseImpovStandards.pdf

Finally, my answer to your last question is “no!” you don’t have to lose your mind or sacrifice your health to care for your husband. There are options.

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My mom is in assisted living, but I am responsible for taking her to all doctor appointments, shopping and getting out for occasional social things. She is so kind to the people at her assisted living facility, but she often puts me down and is rude to people who wait on us at the pharmacy, bank, restaurant etc. Afterward she will give me a big hug and thank me and tell me how much she appreciates all I do for her and how much she enjoyed going out. I come home thoroughly confused and frustrated. She seems to be quite mentally capable. What is happening? 

Martha from TN

Martha, after reading this, my initial question would be: “Is this behavior consistent with how your mom has been in the past?” If the answer is “no,” my next question would be: “Have you addressed this behavior with your mom?” If not, I suggest that you approach the issue with her in a direct yet delicate (and loving) way. It could be that she may experience some anxiety when not in the security of the assisted living or that the amount of walking, as well as the exertion of getting in and out of the car multiple times, is causing her physical pain, which may be causing her to unintentionally respond to questions/situations in a short/direct manner creating the impression that she is being rude. Asking questions about how she experiences your outing, rather than criticizing her behavior, as well as listening to her responses may assist you in better understanding of the challenges your mom faces as she has to rely more on others for assistance and care. 

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After watching my friend’s family torn apart trying to make decisions for their dying mother, it made me think about my own parents. I don’t want my family estranged because of stress over care decisions; however, I don’t know how to approach the subject with my parents. Do you have any resources that could help me to approach this subject with them so that I know their wishes and have them appropriately documented? 

A: Answered by Sue Salach-Cutler

Discussing end of life issues can be awkward. If there is no clear written plan outlining our parents’ end-of-life wishes it can easily cause family conflicts. Talking about these issues proactively is the best plan. It is important for our parents, as well as everyone else in the family, to not only discuss what they want, but to also choose a Health Care Power of Attorney who will make the decisions. In order for this to happen, they must document them in a format that is easy to understand and execute. The best thing would be to have an elder-law attorney create the documents. However, if they cannot afford one, there is a resource called Five Wishes that walks through the end-of-life discussion and creates a document that meets the legal requirements for a “living will” for end of life decisions in many states. Five Wishes not only discusses the necessary medical decisions, but covers personal, emotional and spiritual needs as well. For more information, go to http://www.agingwithdignity.org. ;

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My father thinks I should be at his beck-and-call 24/7 and will call me at all hours to come over and take care of things that are not very urgent. I’m frustrated and have started to turn my phone off at night so I won’t be woken up by his calls. When he doesn’t get me, he leaves me numerous messages, which make me feel guilty. I’m not sure how to stop him for calling for minor things and get some peace from the constant phone calling.


My first suggestion would be to get him to a physician for a physical. He may be getting his days and nights mixed up due to inactivity and napping during the day or some cognitive issue. I would also recommend that you ask him why he calls you for these minor problems: Is he lonely? Does he have anxiety about being alone? This may be an opportunity to start talking to him about moving to a retirement or assisted living community. Most importantly you need to set boundaries with him. You need to take care of yourself and getting proper rest helps you rejuvenate. Make him aware that your phone will be off during certain hours and give him certain times that you will be available to him either by phone or in person to help him with what he needs.

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I am very active in my children’s school and extra-curricular activities, however; lately my 86 year old mother needs more help. I find that I am there several times a week taking her to the store, doctor appointments, fixing things in her home and picking up her prescriptions. Because of her growing needs I have been missing a lot of my children’s activities and feel like I haven’t spent time with my husband in weeks. I feel bad saying no to my mother, but my kids need my support as well. I feel caught between the needs of my children and my elderly mother. Help!


Welcome to the “Sandwich Generation.” There are an estimated 10 million of you out there. The biggest challenge becomes setting boundaries with your elderly mother. You don’t have to say “no,” but you need to create a regular schedule that allows you to assist her and be available to your family. Schedule certain day(s) and time(s) that you will be available to her. For example: Mondays between 2-4pm you will take her grocery shopping AND pick up prescriptions. Saturday mornings from 9-11am you will repair anything that may not be working or help her with any other items she needs assistance with. By creating this schedule you create more control over your time and can be available to your family the rest of the time. You should also consider looking into services that can deliver her groceries or prescriptions, as well as assist her in her home. These services will allow you to spend “quality” time with her instead of task focused time.

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