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My 97 year old handicapped mother has lived with me and my husband for the past 6 years.  We are 70 years old but have only been married for 20 years. We have a part-time caretaker because money is limited. We can't go away anywhere. My siblings are of very little help. They view her as a burden, My mother also has some dementia. My husband and I feel so trapped. I am so angry and sad all the time at what our lives have become. Please tell me how others with an aged parent who cannot do anything for herself cope. Any words of wisdom would help.

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Medicaid. Far from perfect but it does help the caregivers cope. It can pay for some in-home care, or an appropriate care center. It covers medications and supplies. It decreases the financial struggle.

Life is not fair. Being angry and sad about that is normal, but not very much fun. You can hubby need to have more time to yourselves. You both need to get away, separately and together, from this stressful situation. More in-home help could enable that. Not as good as a two week vacation, but better than feeling trapped.

You have given your mother six years of in-home care. What a wonderful gift! In addition to being angry and sad I hope you and hubby are both very proud. But you don't have to go on giving at this level forever. Don't ever consider abandoning your mother. Always continue to be her advocate and see that she gets excellent care. But it is OK if she gets that care somewhere else and you visit her often as her loving daughter.

I also highly recommend finding and joining a support group for caregivers of elders.
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How do others do it? They usually put mom into assisted living facilities or nursing homes. You have been a good DIL for your hard work with MIL. Perhaps it's time for MIL to move?
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Her resources, not yours, should be paying for caregivers.

Do you have a caregiving contract with her?

Have you gotten her qualified for Medicaid?
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I share your heartfelt sadness. I only had my 93 year old Mother living with us for 2 years & we were already beginning to have issues. My husband's attitude was negative & resentful. I felt trapped & in the middle. I was snappy with everyone. When my husband starting having health issues (he turns 70 this year) I knew it was time to do something. I was at the hospital for both of them within a month span & was slowly falling apart. I have some moral support, but no physical support because family all lives too far away. I made the heart wrenching decision to help Mom find an apt. in assisted living. I don't know what your financial resources are, but if she has the money I highly recommend assisted living. If no funds, then medicaid will help cover in some homes, not all. My Mom has been in AL now for about 4 months & for the first time in 2 years she is healthier, happier & more content than while she was at my home. She has community & feels needed with the other residents. I can now say it was the best decision that we made together, but not without many tears & heart wrenching emotions. I still get sad when I have to leave her, but the peace of mind & ability to go where we want, when we want was so needed. It may be too late for us because of my husbands declining health, but if you are both healthy, than I highly recommend you make the move now. She will adjust at some point, especially if you research & find a good AL. Best wishes & heartfelt empathy!
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If you don’t make changes now it will be too late for you to enjoy your life. Your mother will probably qualify for medicaid and she should be in a nursing facility. Place her close to your home and visit frequently, even daily. Your husband must be a saint!
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Long term/short term...In your situation, short term gets my vote....Have a paid person with good references come in round the clock for a week..You and hubs get away for respite...

When you get back, attack the long term: Medicaid seems to me the way to go...My experience is that you can rely upon the people at your county health and human services to steer you right.....A qualified elder care attorney would be nice, but the fees are steep in my experience...

Don't delay or seek agreement from syblings, or "convince" mom that she might go to a nursing home...Just act...

Grace + Peace,

Bob
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Blodoc, I don't think there is an answer. We get caught in a waiting game, dreading something will happen, but knowing that if it doesn't our lives will be frozen forever. It would be nice if your mother had enough money for assisted living or if she qualified for a nursing facility. Would your mother be ill enough to qualify for a nursing facility? Tell us a little more about what help she has to have. Someone may have some suggestions.

We often trivialize what caregivers are going through. We can't just check our parent into a NH like it was a hotel and our parent has no will of their own. We are dealing with a real person who more often than not does not yet qualify for the NH. However, they may not be able to be left alone for long stretches of time. It would be wonderful if all the family pulled together to provide care, but that normally doesn't happen.

Do you think that having respite time away from your mother every few months would help? You and your husband could go on vacations and have time away from the worries. Some of the ALs and NHs in communities may offer respite services. It is something to check into -- maybe it is affordable.

I wish there was a quick fix for what you're going through. I know it can be a waiting game now and it isn't easy.
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Once you find a facility she qualifies for and you have done your homework by researching the medicare.gov overviews, the facility will help you fill out the needed paperwork for Medicaid for long term care. I took care of my mother in my home 5 years, until a fall. When the level of care you can safely provide changes, you have to move her to a facility. You must accept this is your only chance at a life with your husband. You have done your best. It's ok. Move her to a facility now.
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Definitely time to search for a care facility and move mom in. You sound like you need a vacation from all that responsibility. My goodness...you've done plenty...you deserve a break! Search for a home for mom, apply for Medicaid if necessary to cover the costs. Take steps to regain your life. Surely your mom would want you to be happy...
Best of luck to you!
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State home care agencies offer respite for caregivers.Try having an assessment done by a care manager. She may qualify for services such as help with bathing and dressing. Contact your local Area Agency On Aging for info. Respite may involve temporary placement in a NH or AL. This will give you the ability to take a short vacation which you need. Also try caregiver support groups to help you vent . It is as not as hopeless as you think!
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