AstridK Asked June 2016

How do I balance my mother's needs and my own?

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I have been taking care of my mother with ongoing health issues for about three years. Prior to that, she had no serious need for special care. She began with health issues in 2013 with having a pulmonary embolism. Then she had several episodes of delirium caused by UTIs. She had been in nursing homes three times and is now at home getting care by me and CNAs that come to the house five days a week. She recently was told by a doctor that she had several mini strokes two years ago and also has Parkinson's. She needs help with mobility limitations which I and my brother help her with. She is often depressed and frightened. She is so frightened she wants me to be there with her 100% (not kidding) of the time when I am not at work or running errands. As soon as I come in the house, she is calling me into her room. I know this sounds selfish but I feel like I have no life and no freedom any more. I only see my boyfriend who lives about 15 miles from me for maybe 2-3 hours a week. I live with my mother and my brother. I want to be able to care for my mother but she wants me there all of the time. She also calls me a lot every day while I am at work. I try to be helpful and supportive most of the time but sometimes I just don't answer the phone and she can call repeatedly. She has severe vertigo and has developed a fear of death and obsesses about it. She used to say to trust God and give your troubles to God and now is afraid that when you die, there is nothing. She has been a hardworking and supportive loving parent. It's not like she was an abusive person in her youth and I want to take care of her but there is never any break. Sometimes I lose it and yell like I did today. I just wanted to go to my own space and be left alone. Even if I can go to my own space she starts calling me on the phone over and over so I don't feel like I got to be alone. I feel guilty yelling at an elderly scared person. Much of the time I am supportive and caring but I think I am hitting burn out or don't know how to balance my needs with hers. I do not want to put her into a nursing home. She is getting care at home through a PA waiver program plus nurses, PTs, OTs come to the house. When she is in a nursing home, she gets worse. I figure a nursing home is for when the person is very very ill.

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Ambriel Jun 2016
AstridK, I know exactly how you feel. I took care of my mother for 10 years before I finally realized I had to make a change and place her in a personal care home.

I had sacrificed relationships, dedicated half my house to her, ran around like a mad woman getting her everything she wanted and needed and tried to no avail to get her to change some of her bad habits to increase her quality of life and wellness. I tried to be a companion to her, as well. This was the most difficult part for me. She was a good mother to me growing up and I wanted to do right by her.

Finally, for medical reasons, she couldn't be left alone anymore. So, it was either put her somewhere or quit my job. So, I placed her is a personal care home (a.k.a assisted living - memory care facility) where she has actually been much better off in many ways.

She's made friends, her meals are more balanced, her medicine is on a better schedule and she is able to get a bath more often. A nurse is there, if needed. The doctor comes around there, so I only have to take her to the pain clinic.

Let me tell you, it's been a blessing in so many ways. I GOT MY LIFE BACK! I didn't even realize how much of my time, energy, spirit, resources and focus was being spend on her. Now I have more time for me, my husband and most of all my kids. I go see mom 2 or 3 times a week and she is fine.

Yes, she would like to come home, but she's there and that's it. She adjust a little more as each day goes by and she seems to like it there just fine.

AstridK, do what you can for your mom, but don't let your life slip by in the process. I'm 47 years old and I realize now, I should have made better arrangements for her at least 5 years ago.

Don't be afraid to do what you have to do. You will be amazed at the relief you feel vs the guilt and grief you feel now.
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Please try to see your mom's agitation, fright and neediness as symptoms of depression and anxiety. These are very common in folks with cognitive decline; they realize that something is amiss and they can no longer make good decisions.

I would recommend having your mother seen by a geriatric psychiatrist; meds for depression and anxiety can make a huge difference.
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Rainmom Jun 2016
I wish I could take credit for this but it was said by someone else here on this forum. I wish I could remember who, to give them credit - it is the most brilliant analogy I've ever heard in regards to being a caregiver:: Ever notice how on an airplane they say put on your own oxygen mask before attempting to help those around you? Girl - put on your oxygen mask!
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Rainmom Jun 2016
I get a little frustrated when I read posts that use the reasoning that since our parents took care of us as children we must return the favor. Overall, I agree with that and I looked after my dad and I continue to look after my mother. But I think it is an apples and oranges comparison. When we were children living at home we had yet to experience the taste of freedom our parents have as adults. We didn't have our own money to spend, never lived on our own, had to ask permission to go out. Chances are most of the caregivers here are of the era when they still kept score at little league games. We ate what was served or went to bed hungry and if we were rude, mean or acted up - we were punished, grounded at a minimum. In short, we did what we were told. So the challenges that come with taking care of an aged loved one verses taking care of a child can be very different and considerably more difficult. One thing that should be in common however - that even if one is a product of a rocky childhood- chances are our parents did the best they could - even the tragically ill equipped. All we can do is the best we can - even the tragically ill equipped. Having a parent with dementia didn't come with an instruction book - at least I didn't get my copy. So, forgive your mistakes, work to be compassionate, learn as much as you can about the disease. Just aim to do the best you can - for yourself and for your aged loved one.
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Harpcat Jun 2016
You sound like a very caring daughter thrust into a very demanding situation and now you are experiencing what is called "compassion fatigue". It is not selfish to want to have time of your own...nowhere is it written that you must be a martyr. There is no place for guilt. You snapped because you were unable to cope with her incessant and constant demands. Anyone would. I agree with the others about meds for anxiety. It made a world of difference for. my dad. Just know that what you are feeling is perfectly normal. Once she is assessed and the anxiety is handled then you can determine if she is a candidate for skilled nursing or not.
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You want your life back. So does your mother, but sounds like she knows she will never again be the woman and mother who raised you. Her faith has been shakened. Medications might help. Have you tried music such as hymns. Read the Bible with her? I know as many caregivers do that we do want our lives back. More than anything we would like our loved ones restored to health, both physically, mentally and emotionally. Our lived ones were our support, our rocks and now it is like they are a heavy burden dragging us down as we desperately try to keep them safe and care for them. You are in a way already grieving for your loss of that strong loving mother. There are no easy answers, but you have had eight strangers respond to your plea for a solution. I also lost it and did more than yell. I actually pounded my head against the wall one day. Now I have my life back. He is gone. Next time you are feeling desperate take her in your arms and sing to her like a frightened child. The day will come when you will find comfort in this memory. This too shall pass.
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Eyerishlass Jun 2016
I don't blame you for feeling smothered but Babalou's right in suggesting that medication may help your mom's agitation and neediness. They're symptoms of anxiety and with the right combination of medications prescribed by your mom's Dr. she may feel much better.

Continue trying to balance your needs with your mom's. Your needs have to come first (within reason) or you won't be able to care for your mom.
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SusanJMT Jun 2016
Been there for most of the last ten years. At some point (don't remember exactly when) my mother's MD prescribed anti-anxiety drugs. That helped tremendously.
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Sunnygirl1 Jun 2016
I applaud your efforts to balance your your life. I'm impressed with Ambriel's story and I agree with her. My cousin's health did improve in some ways when she went into Memory Care Assisted Living. Her medications are now managed and her anxiety is under control. Now, her blood pressure is great. Her blood sugar levels are wonderful. She's getting healthy meals everyday. Her dental care is now caught up as well as seeing a podiatrist on a regular basis. She get regular baths and daily clean clothes now. And if she needs medical care, she get is immediately. Once others were taking care of her, I discovered that I look forward to visiting her. I have more in my tank to give to her when I go visit and call and I'm not overly stressed and anxious myself.

If you are not sure what type of facility your mom would be best suited, I would have her assessed to see what would be the best fit. If she needs daily skilled nursing, probably a nursing home, but if not, then I would explore Assisted Living. Either dementia or age related decline can cause some of the symptoms you are describing. I would discuss that with her doctor to gauge how she might be progressing.
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ferris1 Jun 2016
No, you are wrong about a nursing home. It is for people such as your mother with multiple, complex health issues that you are not prepared to handle. Put her back in and give it some time and she will adapt. You must take care of yourself first before letting her problems make you ill. How is this helping your personal relationship with your partner? Give her to professionals in a setting, and for God's sake either get another phone number or just don't answer her. Phones calls at work from family members is usually disallowed and you are cheating your employer out of working time by taking her calls. Stop it! See how much better you feel at work and with your partner. Time to let go...
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