How can I leave my mom's side without feeling guilt? She has Alzheimer's / Dementia.

Asked by

I'm the only one in charge of health and legal rights. I feel like I can not leave the house with even my phone. My husband is now starting to go through the same problem with his parents. However they live on the East Coast of Florida. 4 hours away. I am the one they need to help them with the legal matters my husband needs my help. They speak spanish and I don't. He has been there for me all the times with my mom. But I feel bad about just going away for a couple of days to help him out. Every time the phone rings I jump. When she falls it has been many times over the years. I had to be there both here in Florida and also when she was in New York. What am I to do with out feeling guilty. Thank you for any kind of advice. patrica61

Answers 1 to 10 of 10
Expert Answer
3930 helpful answers
If it makes you feel any better (misery likes company), I still hate, hate, hate the red blinking light on the phone. A phone message to me means a trip to ER or worse. There are many of us like that.

You can't be everywhere at once. Try to find a balance. Look for a backup to rush to your mom's side, when needed, if you are gone. However, your husband understands your position. You will continue to feel torn. It's human. All you can do is your best. Get backup where you can, from friends and others.

Does your mom live alone? If so, she should have a personal alarm to push if she falls. You would be the first responder when the dispatcher calls, but you would give the agency a second responder. If this sounds helpful, please check into it. There are many available. You can find them online.

Most importantly, you are doing everything you can, so please drop the guilt.
Carol
Guilt is a terrible thing us caregivers get to deal with. It is not bad enough that we have our hands full but then we are blessed with guilt. I was in tears yesterday because of guilt. I was reminded that I and only i have the control of where I let that take me. Much easier said than done. I think the best remedy for guilt is to talk to someone about why you feel guilty. Most of the time you will find that what you have done or need to do is ok. You need to learn to let yourself off the hook. Again easier said than done. I guess if we did not have these feeling none of us on this site would be caregivings. Be nice to yourself... because some days it is all you got.
I know how you feel, it's pretty normal I think. Everytime my phone rings I jump and there isn't really anything you can do about it. But it is comforting to know we aren't alone. Everyone here has been through or is going through the same in most ways. I admire you because you care so much, you are right that everything happens for a reason I tell myself that all the time. take care
Getting the alarm to push is a great idea because they will be able to get her help right away and call you I am keeping my husbands Lifeline necklace and machine since he has passed away-it helps my kids to feel more secure about my safety and is is not expenseive and just put it in my name and they do call once a month to check that it is working and another good thing it blinks if a phone is left not hung up properly which is good for an older person to have because it happens at times.
I am going through that now. She lived alone, 2 hours away from the closest of my siblings. It was no longer safe for her to live alone and we just moved her - she knows - sometimes - that she lives here now and accepts it at that time but then forgets by the next day. Truthfulness, love and patience are the only ways I have found to deal with things.
I don't feel quilty about my feelings I feel sad and bad, that just watching mom turn into another person. I have no one else. It's only me. But as a care giver I have learned to live with feeling sad at times. The support groups I go to help. But why didn't the doctors listen to me in New York or even the people from church or her own neighbors. I saw the change on one of my visit's to New York from Florida. Mom is safe in the assisitng living. However when someting happens and that phone ring and since I am her only close person I have to be there . I am every she has. That is why i brought her to Florida instead of her staying a dirty New York Nursing home. She was suppose to stay with me in our home of which we made safe proof. we also set up a nice bedroom for her and the extra one was for a nurse if need be.However mom's condtion was alot worse than the doctor and hospital had told me. She was placed in beatuiful assisting living in Florida. first we were only going to have her there for day care. Sometimes thibngs happen in life for a reason I have been told. With out the help of discussion I would be lost at times.
Good advice here, especially about trying to let yourself off the hook! It sounds like you are getting some help from support groups so you may already know about the Alzheimer's Association - they have many resources for caregivers and you can find them on the web. Another resource for caregivers is the Leeza Gibbons foundation - also on the web and they have a facility with caregiver support programs in Florida. Also, sometimes setting up regularly scheduled times for you to do something - maybe as simple as take a walk or do yoga or meditate. Let everyone know that is sacred time for you and unless it is a true emergency not to call you. Just some things to "fill your cup" while you give so much to your mom and other family members. Good luck
Dear bethBky, Thank for your comment, every thing any one can say helps me for day to day. Just yesterday I was a the assisting living for a visit with mom and the resident. My husband came with me this time.My nerves are shot from my last fall. Well of course she remember me however when my hsband went to say hi she smiled and said hi, can gave him a hug and kiss. And then she asked who are you to him. My husband responded I am Pat's husband, She had no ID how I was even married. I was still the child she remembered. Yes it is hard to face the facts. I know mom will never be coming home and will never come back to her self. I have accepted it. You are lukcy in a way that your mom is with you and you can do it. Maybe if mom had lived closer in the past years things would not have happen. We told her for many years to come with us or to buy a house in Fl by us more than 20 years ago. But ( No ) was what she said to me. That that was her house in New York and was were she wanted to die. Like many people have told me things happen for a reason, and you can not change certain things. But when see all the residents in the assisting living, nursing homes with different stages of the illness even little children with problems you just ask your self, is this what GOD wanted to happen to lovely people, and children? THANK YOU AND GOD BLESS YOU. patrica61
I have an 89 yo mother with dementia who lives alone. She refuses to let me hire anyone to come in on a daily basis to help her and look in on her. I am an only child, and and I work full time. I have been cooking all my mom's food and bringing it to her. I have no one else to ask to help me. My mom has no friends, no husband, just me and I am worn out. I finally got a nurse to come in to see her but my mom was afraid of her and has now decided she will never let her come to see her ever again. She was my last hope. I think my mom needs to go to a memory care facility, but she refuses. I do have POA, so I am not sure how I could force her to leave.
Her doctor simply will not help me. I would be very interested in anyone out there that had a similar situation and how in the world did you get your mom/dad to go to a facility without fighting it. Help!! Thanks.
kathy
Dear Kathy, I went through the same thing with my own mom. She was living in New York when I first notice something was wrong. I had mentioned to her doctor over and over. it was not until one visit after a fall I went to check on her and bent don't to kiss her good night. She put her hands aroung my neck, I could not breath. I took her back to her doctor and special test done, SHe did have alzheimers/dementia. He put on medicine. In 2005 after meeting with the state of New York about things happening and her fighting with the heath care people. I knew it was time to do some fast action. I was the power of attorney,legal rep,full health epoxy person and care giver. The state of New York stated for me to go home get things in order and come back in two weeks. Well I had a meeting with my boss and higher management I was a family medical law act. But I knew moms heath was getting worse. I told them I may have to give my notice and bring her to Florida. they told take care of what you have to and they will talk about it later date. That was in Sept 2004. You see mom left the gas on one day when iI had to go get her food. The fire dept had to come and also protective services was called in. She was OK put the illness was taking over. When the State of New York told me to go back to Florida they said they werre going to watch her, well they did nothing I called every day twice for one week to make sure every thing was OK and she was taking her medicine. Well she had fallen, no medicine were taken and she was not eating. I went to New York and found her in a nursing home for rehab, she had fallen and broke her arm.I had to sell her home and bring her to florida to be with me, however the doctor never told me how bad she was. Mom 's memory was going, We made our house child proof and I did look for a day care place. My job was given notice that I would have to leave in June 2005. When mom came to Florida i had her with me only four days, I had to call the emergency Tampa Fire dept to come. She passed out on me. Her sugar was so high, and the firemen told me she was on too much medicine, I could not take care of her. I took mom to the day care place (assisting living) family like place one day for a meal. Only to find out I had to place her there. My mom had friend but when she got sick no one would help only one sweet neighbor. My mom only had me also. She was very happy for two years only last year she was in the hospital three times. She passed away in my arms Oct 5, 2009. But she knew me only. i would be at the hospitals feeding her and helping her all the times. it is hard that you may have to place mom some where for her own safety.Look around and call the alzheimers 1-800# for help. Your States eldery care can also find a place. You said your mom had a nurse, my mom used to fight with all the help even in the hospital. When you find one clean place take her for a day visist maybe they can fit you into the lunch time. It is hard, I know. My mom fought with everyone even me at times. When mom was at the assisitng living she thought it was her home. I was there a lot and even did sleep over with her. Kathy you find a way. Make sure you talk to her doctor one more time and get a letter about her condition. and find a clean nice place for home. Best of luck to you, it is a hard battle. hang in

Share your answer

Please enter your Answer

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support