Mom will only let me help her and I'm beginning to resent it.

5 answers | Last updated: Sep 14, 2017
A fellow caregiver asked...

My Mom has been living with my husband and I for the last 3 years. She has a lot of medical issues and needs 24hr care. She has dementia and is becoming very difficult to handle I feel like I am losing my mind. She refuses to let my husband help her so that means I have to do it and that's fine except it tethers me to the house. I find myself getting angry and frustrated and I know that doesn't help the situation. I try deep breathing, I try reasoning with her even though that's pointless. I don't know what to do. Any help would be appreciated. thanks

Expert Answers

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

Caring for a loved one at home is, as you've found out, a daunting task. Because your mom has multiple healthcare problems and dementia, the challenges can be overwhelming.

First, you have to realize that your health - both mental and physical - are in jeopardy. To resolve the caregiver burnout issue, you and your husband have to make some decisions about your roles with the care of your mother.

If keeping your mother is the only alternative you have or can financially support, you're both going to have to share in the workload. You mother doesn't get a vote on this decision, because there's no way, as you've discovered, to rationally explain what's going on and why you can't do everything for her.

At this point, I want to also let you know that your anger and frustration are normal, because what you're being asked to do is almost humanly impossible, but your mother doesn't understand that. You are not the problem, but if you continue to try to meet all the demands that are being placed upon you in all aspects of your life, you too could become a casualty with ill health or worse, as a result of your mother's health problems.

If you plan to have your own social life, be a wife, friend, grandmother and daughter, you have to have balance in your daily activities, and be able to do so without guilt or remorse. It sounds like your husband is willing to pitch in, but both of you still have to remember that you have a marital obligation to each other that does not include upsetting your marriage, diminishing your time together or denying yourselves fun time away from home, family and yes, even ailing mothers.

I suggest you contact the local Alzheimer's Association to learn what respite programs they may have available for you. Also contact the Area Agency on Aging or local Council on Aging and ask what programs are in your area to take some of the pressure off of you and your husband.

If you can afford it, bring in an outside caregiver a few times a week to relieve you of your duties, and to give you and your husband a break - particularly if your mother needs assistance during the nighttime hours.

Allowing someone to help you will be good for you and help your mother by providing her with outside socialization. Mom's problems will not get better, and her dementia will ultimately present you with the issue of whether you can provide the level of care that she will need within your home, or if she might be better off if placed in a skilled facility that deals with 24-hour care of advanced dementia patients.

If you mother has a long-term care insurance policy that will pay for her caregivers or a facility, now is a good time to make use of it. If not, you may want to talk with a professional "“ a geriatric care manager or elder law attorney about your options, Medicaid, and the criteria to get public assistance if/when your mother should require it.

There are so many aspects to your situation, and without more information, it's difficult to be more specific. Know that you are doing your best, and you're showing your mother a great deal of love and support. While she may complain about some of the changes you put in place going forward, keep in mind that it's as much for your well being as it is for hers. Good luck.

Community Answers

Lhfsun answered...

Dear Mr. Kauffman,

Thank you for replying. Your response made me cry, which I seem to be doing alot these days. I know that I need to take care of myself and I know that i need time away. I just seem to be stuck. I did take Mom to the Dr. this week and tell him my concerns and he has put in referrals to a home health agency, Hospice and a geriatric center. I am hoping that they will be able to help me. I love my Mom and I told my Dad that I would take care of her. I hate the thought of putting her in a home, but on the other hand I saw what happened to my Dad after caring for her for years. My husband really wants to help but she won't let him. I will get through this I know. Thank you for your guidance, I will do my best to follow through.

Epb answered...

If you don't have a copy of "The 36-Hour Day" get one. They offer terrific insight for caregivers about dealing with a person with dementia, especially how to handle behavior issues. There are some great tricks to it that work, and many are covered here.

It's easy to take what people with dementia say at face value. Your continuing to cede to her is only reinforcing her sense that you're the one she can trust. We find that keeping things upbeat, no problem, and being silly goes a long way to helping my mother feel that everything is alright, which keeps her calm. They really pick up on your "vibe" so it's important for you to stay as breezy and upbeat and confident about your husband doing things for her, and being supportive of him when (oh and they do) she complains that he didn't do something right or whatever. If she complains that he doesn't do something the way you do, or some other beyond outlandish claim, don't take it seriously, laugh and reassure her -- "well mom at least he does a better job of helping you than the time I had him do the laundry!" Or something like that where you can then distract her with a funny (even made up) silly harmless story about doing laundry. Get creative, keep it upbeat, NO problem, and... do not give in. If you and your husband decide that he's going to be the person to help her with "x," stick to it no matter what and figure out ways to reassure, distract, and calm her. Arguing or trying to rationalize with a person with dementia is futile and only adds to your stress.

The biggest thing to remember is compassion. This is not something they're doing on purpose, they are in a state of constant confusion about everything, and get depressed that everyone tells them they're wrong, that didn't happen, etc.

Big hug and good luck -- get the book!

Corrine answered...

I know the feeling very well. My mom has been with us for 7 yrs. But the last year has really been tough. Try to get a sitter, local person, that needs work, not as expensive, to come in 1-3 times a week, for just a few hours, or so, and get out. To get groceries, take a long walk, sketch a picture in the park, believe me it has helped a lot. You will make it, just take one day at a time. And ask the Lord to help you, I say that so many times in one day, over and over again. Try to get a break from a sibling if possible. Good luck, you'll be ok. Go outside and dig in the dirt, back to nature, enjoying the butterflies, or hummingbirds zooming about from the feeder. And put up a bird feeder, and suet. close to house so you can enjoy and your mom as well. Helps!!!Goood luck! God be with you

Manito7o7 answered...

I feel your pain. I'm 22 and my mom has been showing symptoms of forgetfulness since I was in my freshman year of high school. Of course, she has digressed greatly since then and now makes a lot of inaudible noises. My dad won't feed her by hand, shower, or help her change, so he depends on me. One 'bright side' to her worsening condition is that I don't think she remembers anyone, so she doesn't mind not having me around. Also, I've looked into adult day care. Even though my dad doesn't support the idea of adult day care nor do I want her to go to adult day care, nursing home, it doesn't hurt to do some research. Doing research will not only give you an idea of the location and cost of the facility, but it will also allow you to be more prepared for the future in that the process will be smoother. What helped me cope is to see a professional counselor/therapist. This helped me think and evaluate myself and the situation differently. Join a group. Pick a hobby. Seriously, it's fun. (I make bracelets and metal craft. Recently I joined a paper craft club with some ladies at a local store. It's good to have 2-3 hours of good social time) Also, you need to have someone else take care of her at least occasionally in order for you to have your own life and sanity. In this way you'll be able to function after mom is gone. After all, our mom's have dementia. Do you really think a few hours a day with someone else will really effect your mom or the person caring for her? Trust me when I say that I know what you're going through because the guilt of not being there for my mom while was at school or at work ate at me. It effected how I dealt with other problems in my life and my work habits, so I agree with Mr. Kauffman in that your feelings are normal. The main idea is to let go a little but care for your mom as much as your will allows you to while she's with you.