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tugarjd Asked March 2010

My mother lives with my husband and I, but we want out. How can we get our lives back?

My mother is 82 years old with serious health problems. She has seizures (it's like she faints) about every two weeks, she has brittle juvenile 1 diabetes and on insulin, her eye sight is about gone, her hearing is really getting bad, she always feels dizzy and unstable, she hurt her back area pulling on my step-father while he was in the nursing home, so her back hurts all the time. She never feels good and she complains all the time about her health to me and to family and friends and strangers. She sits on the couch all the time and complains and dozes off and on. She has a terrible attitude and is so grumpy with me. I've gotten to where I'll snap back at her at times, then I feel bad. My husband and I are so depressed because we have no life, no help, and can't seem to know how to go about getting out of this situation. Mother needs assisted living, nursing home or hired help here. Any suggestions.

EXPERT Carol Bradley Bursack, CDSGF Mar 2010
Any of the three options you mentioned would help. I am not sure assisted living would take her as she seems to need a lot of medical attention. You may want to try in-home help from an agency to get her used to other people taking care of her, and then look at nursing homes. This could destroy your health and/or your marriage. You do need to take some action.
Carol

anonymous11306 Mar 2010
DJ.

I hear your pain over your elderly mother's terrible health; your husband being upset with you because of how you let your mother control you; the anger your grown children have about not getting to see you; leaving your house of 43 years to come live with your mother so she would not have to go to the nursing home; and being in such a pickle due to lack of backbone as you described it in a post on another thread back on December 18, 2009 which has led to the pain of not having a life; your own health not doing well along with a marriage in trouble.

It sounded like from one post on another thread from February 18 that plans were beginning to be made for a change. That was almost a month ago. Have plans been made? I'm glad to see that you are thinking about staring with in home care a few days a week. I also noticed a comment on another thread about having the names of two sitting services but not ever being brave enough to call.

I went back over other posts to help me get a big picture of what is going on. What I'm reading in the above paragraph are symptoms of being depressed over things which is very understandable; being fearful of your mother who controls you because she pushes your buttons which she put in there when you were a little girl; obligated to keep her out of the nursing home at any costs (notice part of the reasoning for getting in house care is to be able to continue caring for her at home which given all of the dynamics does not sound reasonable to me); and guilty for thinking as well as planning to do something different for her care than right now plus a sense of guilt over your marriage, possibly over leaving your home, and over not getting to see your children and grandchildren.

I understand your hating confrontation and try not making waves, but just staying frustrated about it all and complaining to your husband, but controlling him from doing anything is not getting anyone the help they need and such codependency while trying to keep everyone happy with you ends up making no one happy.

My mother who is now 78 lived at home with seizures for several years under the care of a neurologist and last year she just had to go to the nursing home. She's been on Depakote and that dosage has been doubled which means she sleeps a whole lot.

While I don't really like confrontation, I don't hate it and have had to become more proactive with relatives, etc. in dealing with my mother's declining health and the terrible financial situation she and her husband allowed and kept a secret for 6 years.

So, I offer the following action steps.

1. You and your husband see your primary physician to get something for depression and possibly also anxiety for yourself. Why? Because I think you need this to get you moving through this current crisis.

2. Ask your mother's primary care physician to write up an order for home health care. Why? Because with such an order Medicare will pay part of your mother's home health care expenses.

3. Ask the home health care person to do an evaluation of the situation and tell you what they think needs to be done. Why? Because you need an outside, objective, professional opinion.

4. Find a certified sitting service who can come in during these transitional days to free you up to both take a break and work on some other things related to this.

5. If the home health person suggests skilled nursing like a nursing home (which would not surprise me), then use the energy and time that home heath care. You will need to know about all of your mother's financial and insurance reasources for this.

6. If you don't already have both durable and medical power of atty, you will need to get these two soon if that is possible. After you get them, I'd have the neurologist evaluate your mother's competency level and get him to sign a noterized document to that effect just in case you ever need it.

7. To begin getting past the F.O.G, (Fear Obligation and Guilt), it will require some personal therapy from a real therapist (which I'm not) like a liscened clinical social worker.

8. While getting relief from the immediate situation will help your marriage, I suspect there are issues remaining that also need counseling which maybe someone like a pastor or such could handle.

9. If at any point in this, you see a need to ask your adult children to help you get something done, then by all means ask them.

10. In this transitional time where the adult child in some sense of the word is like a parent to their aging parent, one crucial outlook is needed which for some takes counseling to really get a hold of and a support group to keep. You yourself, your mother, your husband, your grown children, and your teenage grandchildren will all be helped by you not emotionally reverting back to being your mother's little girl, but by being your mother's adult child. This is not always easy, but you don't get backbone by waiting for it.

11. Please stop shooting yourself in the foot by thinking it is easier in a sense to just give in, stay frustrated, and complaining. Instead chose to make a plan. Tell yourself and others this is what you will, shall do and other active type verbal statements like I can, I am able, etc., instead of I might or I know I ought to , or I probably will or I'm starting to begin thing about possibly making plans. You do have the power of choice and using that power of choice is the responsible, adult thing to do which is really needed right now.

12. After this immediate crisis is over by getting yourself the help you need and your mother the adequate care she needs, then you and your husband each will better prepare your grown children for your own journey by going to a lawyer with whomever you choose and grant them durable and medical POA for each of you.

I sincerely hope this helps and I had no idea I'd come up with 12 steps.

Take care and keep in touch.

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LynnPO Mar 2010
Dear DJ - Sorry to hear of your plight but I completely understand and have been in the same boat myself. No one's answered your direct question: where do you find information so here goes:If you need help understanding everything your mom will need, making decisions or understanding financial assistance available for families contact your county Area Agency on Aging. Explain your situation, Mom's condition and that you can't care for Mom at home much longer. Your state department of Health may also have information online or in brochures. If you have a specific nursing home in mind, contact their social services office or admissions rep. They deal with things like this all the time and should be able to give you guidance. Based on my personal experience, here's some more advice: 1. Keep asking questions until you're satisfied you have as much information as possible. 2. Don't let anyone make you feel like a pain in the rear. They will act that way sometimes but it's because people in these fields are REALLY overworked and just have too much to do. Don't take things personally. 3. Be sure to take care of yourself during this process. Even though it feels like you're just doing the same old things, it IS VERY STRESSFUL. Remember that it all seems emotionally painful right now but once your mom is settled, it will seem worth it. 4. Don't let guilty feelings creep in. I guarantee you'll feel guilty for moving her. You'll feel guilty each time you visit and then walk out the door leaving her there and you'll feel guilty at home over the sense of relief and freedom you feel. It's natural and it's human. You need to hear from your friends and family that you did the right think - tell this to yourself, to your spouse and your kids often and ask that they tell you. YOU ARE DOING THE RIGHT THING for your Mom. That's what good daughters and sons do. Our parents did the hard things when raising us - time outs, grounding, sending us to our rooms, teaching lessons and all that - it was not easy. Now it's our turn to do the hard things and they do love us for it, they just can't show it. Good luck!

cindybrownlbsw Mar 2010
There are folks who are happier living in a congregate living environment because there is so much more stimulation than in a typical home.
My concern after reading everything that you need to address YOUR health problems. Think about being on an air plane when the flight attendant tells everyone that in the event the cabin loses pressure oxygen masks will drop from the ceiling. They proceed to tell you that if you are traveling with a child or someone else who needs assistance you should put YOUR mask on FIRST. If your marriage and health are ruined, how does this benefit your mom? It also sounds like your mom's health issues are so complex that she needs 24 hour medical care. Is it time to allow a team of medically trained experts care for your mom while you and your husband care for yourselves? Making the decision to move your mom to a nursing home isn't selfish or cruel, it is recognizing that the situation has grown beyond your abilities and you need professionals to be mom's caregivers while you go back to being mom's daughter and son-in-law. Best wishes and God bless.

janny52 Jun 2011
susanlovesu2 - no one asks to be born and most parents I know would not expect their children to carry off such a daunting task, unless they've been guilt trippers all their lives. Please keep religion out of this forum if you are going to judge someones actions. Sorry but it's way out of line.

djnorris - There are many nursing homes which have excellent staff members. You have way too much on your plate and I'm speaking from personal experience. We placed my mother in a nursing home when the time spent on care exceeded the time we could give without ending up in an institution ourselves. She has Alzheimers and it wasn't safe to keep her home any longer without 24 hour care.
My mother needed the type of care which we were not qualified to give. It sounds like like this may be your situation also. Shop around and inspect nursing homes in your area. Speak to your mom's physician so that he/she can make a referral, if you don't already have power of attorney over your your mother-get it, and sign up for medicaid. She will be better cared for and you will have a life.

My father and I visit my mother 5 days a week and the time we spend together is quality time.

pennynunez Mar 2010
I hired a caregiver to come 5 days a week to start with, from 7:30 am until 12:30pm. She gets her up, gives her a shower, rolls her hair, fixes and feeds her breakfast and lunch, and sits her on the commode every 2 hours. She visits with her and watches TV so my mom is less lonely. Mom still gets to eat all her favorite foods too. Meanwhile, my husband and I can go for a walk, out to breakfast or an early lunch, to the grocery store or Walmart and we are getting along so much better!! The other hours in the day that I can't leave are much better. It takes her entire Social Security check, but her brother helps with her meds, food and other needs. If you don't want to put her in a nursing home it sure is a great choice. Want to mention, my mom's doctor put her on a medicine that helps with the diabetic fainting autonomic system disorder so she faints less now. All of this plan works until it takes two people to lift her for bedtime or potty time, because unless your husband will help lift her, you will probably need a nursing home at that point.

pamela6148 Mar 2010
Many of us want our lives back however we cannot predict the future. Who would have ever thought this would happen to our parents, and we learn as we go reading, studying, and trying to do what we can to make our situations suitable.

Sometimes I find myself asking God "who is this woman, and where is my REAL mother" but this is the hand I've been dealt, and this is the hand that I will play.

It doesn't get easier, we just adapt and grow within our own experiences. We all want our lives back, but I wonder now what I'll do when I get it!

ibarro May 2010
I would recommended you not home care or assisted living facilities, but nursing home. don't feel bad to put her in a nursing home. I would do the same if you were in your shoes. Of course, you need your live back. maybe you can work, so you won't feel stressful. just visit her when she is at the nursing home. talk to her doctor/social worker and tell them that you have decided to put her in a nursing home because you can't take care for her anymore. that's not a crime, is neccesary. good luck

lach61 May 2010
I am primary caregiver for my m-i-l who lives with my husband, son and I.
Our dog, as well. He is up there in years, so in human years--he's older than my m-i-l. When I was asked to be pc, I said I would under one (1) condition--that all of the kids help out. She has 4 daughters and I'm married to her only son. They all came over at first (lasted a few months)
then it was down to my 2nd s-i-l and I taking turns having her o/n. My oldest s-i-l could help out only on the weekends and that turned out to be for about 4 hours on either a Saturday or a Sunday. My youngest s-i-l comes over once a week to help give her a shower. (That helps immensely!) I've done it occasionally and it's not an easy task--so she is greatly appreciated! Any help I can get, I will take. Just recently, I got a HHA in to watch her while I attend my Zumba! class on Thursdays. They've just recently added another one, so if I can't make Thursday--I'll try for Friday. We also get a HHA in from 10-4 while we attend church and get our errands done. She's (my m-i-l) not the only one who needs socialization! I think my husband's sisters forget that. My husband just got back to work after being laid off for 8 1/2-9 months. We're trying to get my oldest s-i-l to take my m-i-l by 1-2 pm on Saturdays so that we can go up to the gym and workout. I was feeling like my life was slowly going away until I got into Zumba! Good luck to you.

janny52 Mar 2010
My 94 year old mother needed 24 hour supervision because of Alzheimer's, incontinence and a history of falls. At the same time my father was in rehab recovering from a fall. I was becoming resentful and worn out because I had to put my life on hold completely. My mother was frequently sad because my father couldn't cope with the disease. My husband (who still works) needed to prepare dinners and maintain the house and my sons would give me a break when I needed it.

After much painful deliberation and tears I bit the bullet and placed her in a nursing home 6 miles from home. She has been there for 2 weeks and to my surprise she has adjusted beautifully and is actually happier than she was at home. She is in a dementia unit where she gets a great deal of attention. She is usually happy, laughing and lends a hand to the other residents. She has a purpose in her life again. Personality wise she is the mother who I lost to dementia 5 years ago. I'm not saying that a new living situation is necessarily going to make a difference for everyone. All I can go by is my own experience.
I visit daily and our time together is quality time, free of the stress and depression that was plaguing me when I needed to care for her full time.

In making this decision I needed to be completely honest with myself about my own needs and hers. I came to realize that there are people who are better qualified at caring for her than I am. I also had to let go of other peoples opinions and know that it's not selfish to want my life back.

I finished filing for medicaid today which should defray most of the costs.
I believe that any one who is the caretaker of an elderly family member needs to be brutally honest about their own needs. We need to take care of ourselves first. I know that sounds cliche but it's true.

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