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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote

I am a married 55 year old who is an only child with no other family or close friends and am caring for my 98 year old mom (who I have always lived with). She has no friends left, they all have passed on. She has been in great shape up through now (no disease, no medications, nothing except that her hearing has gone from 50% deaf to about 98% deaf and it's excruciating to try to talk to her without screaming at the top of my very capable lungs). Last year she fell and broke her leg and was in rehab for 6 months and still curses me out for "putting her away.” This past month or she seems to be in decline. She is very nasty and mean to me, she does the strangest things, and she never sleeps. She's kind of dangerous, she leaves the stove on (with the pilot light out, but the gas burner in the front on. She leaves the water running and floods the bathroom, stuff like that. She talks to herself all day and night. My husband is losing his mind. I work from home, so I am with her 24/7 and I am also slowly losing my mind. I am getting about 2-3 hours of sleep a day. I am on "mom-patrol" constantly, listening to make sure she isn't falling, or if she goes into the kitchen, I go to check things out, etc. I love her so much and a home is completely out of the question (I made a vow), but I'm not in denial that at 98, the end is fairly inevitable, though her family genes are so good that her siblings have lived until 106. We've tried the visiting nurse route, but she refuses to have a home health care worker. She doesn't want anyone but me. I work, I have responsibilities, and I am not in the best of health. Any suggestions?

Shared by Joanne in New York

Shared by: Sandi
North Dakota

Joanne, I am sorry that you are feeling so exhausted and not able to have some control in your own home. Please..carefully read what Barbara wrote. It was well done. In several examples on your note there are issues and I want to point out to you that the main focus for every caregiver is the SAFETY of the care recipient (your mom). She is no longer safe in your home. She had a fall, she is experiencing some confusion, she is up day and night, leaving potentials for fire or carbon monoxide and more. I get the being frustrated for her, and the verbal guilt trips. I have experienced them too. If you do not take care of yourself, you will be come a statistic as a caregiver and die from exhaustion, before your mother dies. Then what will happen? Talk to her medical provider right away! 'Tell on her' about the issues at home. Tell provider you need help and orders for a facility. From the sounds of your description, she will need nurs ing home placement. Has the medical provider looked at her ears? They may be plugged with wax and need a cleaning. Good idea to check out. Your mom, and you are at risk. It's time. Best wishes to you and may you feel the support and love extended.

Shared by: Joanne
South Dakota

Joanne, I've walked in your shoes. They pinch and hurt, but you have to take care of you, as if you don't who will? When I got desperate, I got Home Instead to come in and give me some relief. I hired them for me! They gave me time away from home and I called it my 'sanity time'. Eventually a nursing home was the one thing you had to deal with. You need your wits about you then as to what is acceptable and what isn't. So love your Mom, enjoy her good times, get yourself some help and explain to her they are there for you. But if she needs anything they will be happy to help her.

Shared by: Patricia

If this type of mean and nasty behavior is not normal for your mother, you should consider what has changed in her life. It could be anything from frustration at being deaf to a urinary tract infection to frustration at loss of independence. Has she had any food or medicine changes? If this is normal behavior and you are only now, yourself, becoming frustrated then you must consider things that will relieve the pressure on yourself. Starting with the right support group, a therapist or counselor. Your mother might benefit from a geriatric assessment.

Shared by: Kevin

To be blunt, I hope you don't die before she does! It is so challenging to be in your position. But it seems like you also have a responsibility to yourself and your husband, not just your mom. For your sake, you may need to rethink the nursing/retirement home and visiting nurse or home health aide idea. I have seen too many caregivers destroy their lives because of a vow they made with good intentions. And let's not forget that maybe your mother needs an outside influence - she may be quite scared of her future, and new challenges such as a home health aide may actually be of help to her (and you!) physically, mentally and emotionally.

Shared by: Barbara

I wish I didn't have to suggest this, but considering the deterioration of your own health, you need to take care of yourself, so that you can better take care of your mother. If you do not get enough sleep, you are dangerous to drive with and be in the house with, too. You yourself might accidentally one day leave the gas burner on without the pilot light. The more crazy we get, the crazier we act. That also ends up deteriorating your relationship, or ability to have patience, with the person we're caring for. Yelling happens more when we're tired. Physical and emotional abuse happen more when we're tired. It's not just for parents of little kids, but for anyone babysitting for a person who acts like a kid. If your mother refuses a home health care nurse/aide, consider asking her to accept it for your sake. I don't know how much that would influence her. But if she loves you, she wants to see your best side, your most pe rsonable side, the side that is patient and loving and caring with her. If she wants to see that, and have a good relationship with you, then she will accept things that you ask her to deal with, for your sake, and ultimately for her own sake. She gets treated better with more hands helping out, as well as when you have had more sleep. In addition, her complaint of having been put away for rehabilitation is more an expression of her own sense of a lack of control over her life and surroundings, and much less to do with you personally. She probably deep down doesn't really blame you, but you happen to be the next closest (physically and emotionally) person on whom she can unleash her displeasure and frustration without fearing a backlash against her for her insults and negative opinions. Remember, at this point, she's incredibly frustrated as well, by her own body's and mind's limits. She will strike out, and since you're there, that person receiving all that frustration will be you. You have to keep in mind that it's not actually anything personal towards you specifically. It's the only way she feels she can express herself safely without repercussions. If you are able to let those complaints go, and if you can feel peaceful that you're providing the best care that you're capable of providing, then you can separate yourself from her emotional issues. Her emotional issues are NOT your own. You are not the same person! You are able to have concerns of your own about your mother safely and peacefully, without interference from her. You are able to push your mother's own concerns and perspective out of your mind, because only one person needs to deal with those, and that's your mother. She needs you to have your perspective to be able to help her as much as you can. All that said, it seems like your mother is actually a physical hazard to have in the house. If she were your grown disabled child, you would do w hat was best for the whole family - your disabled child, yourself, and your husband - you would request additional help in the house from an outside source (visiting nurse, visiting day care, etc.), or move the child into a group home to be with other disabled adults, where there are aides and nurses that are trained to take care of those children - and don't forget that THEY are not required to work 24/7 - even they have backups, and only do 8-12 hour shifts - because that is humane to the workers, and safest for the patients. Why should you be treated any differently?? Many people caregiving for their parents have made vows to never let the parent move into a nursing home, or even assisted living. But many people have retracted those vows, too. No matter all of their best intentions, there was a breaking point - a point where the safety of the patient or the household was at risk. It sounds like you might be at that point. If you cannot provide an additional "babysitter& quot; to take over the other 8-12 shifts of your day, you have to consider that your mother - and you and your husband - would be safest if your mother was looked after by someone else entirely. This does NOT mean you're "abandoning" her, which might be what she'll try to make you believe. This is separation anxiety, based on the fact that she feels like she's losing so much of the rest of her life, and it sounds like, losing part of her faculties as well. It's a transition, and she will vent her frustrations. But just as it's difficult for a child to leave her parents' home, it's difficult for a parent to leave the child's home. She's been taken care of pretty well at her child's home, with lots of attention, even despite the insults and frustrations she shares. In a new setting, she'll have to adjust to how people treat her. Sometimes they have more compassion for her state, since they're trained for it - and wa it for it - because they can leave to go home and recharge themselves for another work day. This is what you need. A way to recharge. A way to remove yourself from her needs and constant demands. Then you will rediscover yourself, and be able to concentrate on your work, your household, your other responsibilities. And you will ultimately become a much better caregiver for your mother, because you can be calmer, knowing that she IS being taken care of, even though you're not always there all day and all night. That calm will translate to more smiles, more helpfulness, more compassion for your mother in ways you didn't think possible - all because you're not forced to pay attention to her 24/7. She might be more appreciative of your efforts than I'm making her out to be. She might cry about being left alone in a nursing home. If she loves you, and appreciates what you do, ask her to consider this FOR you, for your safety, for your peace of mind. Assure her you wil l visit very very often, every day in fact. You can be her extension into the outside world, bringing favorite snacks, new magazines or newspapers, asking people to come visit her, take her out for meals or walking through the mall, etc. The thing is, considering the amount of care you give her, it's highly unlikely you'll just ignore her when she's in a nursing home, and you should tell her that - if she loves you, she should be able to recognize that, and try to work with you. If she doesn't recognize it, she's too involved in her own frustrations with her life to accept that a change - again, for everyone's safety - might be needed. Ultimately, the baton of life gets passed to the next generation, and now it's your turn to take it, and help your mother recognize that you need her to help you live a better life. If she refuses to listen to your needs, you'll need to explain to her how she's a physical hazard to your household. You need to defend what's yours. Put on your own oxygen mask first, as they say in the airlines. If you do decide to move her to a nursing home, the move won't be without stress, sure, but it will pass in a few months, and you will ALL need to adjust to the new situation. You will be able to sleep, and hopefully enjoy spending time with your mother. She will meet new people and get used to new routines. With your continued involvement, she could flourish there. She may be happier there than at your home. And you'll probably be happier with her there, too. Goodness, I wish you lots of good luck! I really hope things work out for you!!

Shared by: Vanessa

My opinion is that you have to also take of yourself. I vowed to never put my parents in a nursing home. My mom has dementia and my father is still her main caregiver. Compared to your mom my parents are spring chickens at 78 and 80. I now have had to rethink things and my stance on the nursing home thing is as long as I can care for you I won't put you in a nursing home . I would at least get a home health aid to come a few hours a day or come a few days a week. You can't care for her if you can't care for yourself. You need to go out away from the house for a few hours. Good luck and God bless

Shared by: Mary

I had 24 hour care in our home for my elder husband-age 93. He also did not want outside help. I finally had no choice but to hire 24 hour caregivers from Visiting Angels. I simply explained to my husband that the ladies were in our home to help me so I could run errands and be able to leave him in the comfort of our home. He got used to having three different ladies in the house over a 24 hour period and it was a tremendous help to me. I was in major caregiver burn out so the caregivers basically saved my life. All I can say is to hire help now before you fall ill. It's tough having strangers in your home, but at least there may be a moment where you might be able to just "let go" for a few minutes and breathe. My prayers are with you-be strong and be gentle on yourself.

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