Follow
Share

Hello, fellow caregivers! 6 years in, just found this site - feel like someone threw me a life preserver! I'm ashamed to say it but I am pretty much doing just what needs to be done. I don't have any respite other than when I go to my full-time day job. Mom had a stroke in 2008, has diabetes, vascular dementia, arthritis, high blood pressure, Achalasia...just took her in and she now has thyroid issues. Up until a month ago she was up several times every night, until doc started her on Seroquel, now she sleeps a bit better (and so do I). She can no longer read or do crosswords or even see tv well. My mom raised 7 kids by herself and helped with several grandkids. No one visits or calls, except maybe on holidays. Maybe. Sometimes. Ok, rarely. I'm having trouble staying motivated and try to remember how hard it must be for her to lay there all day. She grew up on a farm in a huge family, and it was the happiest time of her life. I read her James Herriott's books and she enjoys those. I feel like I've lost myself. I do like to garden, read, and enjoy my pup/grandpups. Mom's at a point now where if I walk out of the room she's likely to call me. Was gardening one day - she didn't want to go outside and sit with me - when she threw a coffee mug through one of the windows - luckily my grandpup was there and he came running to get me. She told me she called 911 because no one would answer when she called (I was right outside). She can't wander or anything like that, but wants someone in room with her or she gets scared. I know I'm burned out, but how do I regain a balance? Any suggestions from those that have been there/done that? Blessings and peace to you all!

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Hey Dee1963. I'm glad you found this site. It really helps me. I've never been in your situation though. I placed my loved one (cousin) into Assisted Living when she became very affected by dementia.

I do understand how exhausting it came be though. For awhile I was trying to care for her, get medical appts., locate a facility, handle financial affairs, etc. It is extremely stressful.

You say you work during the day. Who stays with your mom? It's horrible you don't get any real help from your siblings. Would it matter if you told them point blank what you need? Some people are just ignorant and others choose to ignore. Since you know your siblings, you can determine if it's worth the energy to seek their help.

I would certainly get some respite. You need that. It's not just for you. Your mom needs you to be refreshed and in good spirits. If you don't get some mental health days, you won't do her much good.

There are places you can get assistance with in home care. I would explore them. This is true, regardless of the financial situation.

IMO, reading this site is a very good way to charge your batteries and learn how to treat yourself better. It taught me to assess my situation, weigh the options, do my research and locate the place I needed. It's given me support in being an advocate for my cousin. Here you can benefit from other caregiver's experiences. I'm sure you have a lot to offer others here.
Helpful Answer (2)
Report

Good question, Dee. To tell the truth, I don't really stay motivated. I just do what has to be done to get through the day. I've learned the house doesn't really need to be spotless. Clean enough is good enough. I've learned not to take much notice of my mother's bad habits. She is 88 years old with multiple problems. I wish she could be happier, but I know I can't make her happier. I can just cook, clean, shop, transport, etc. I don't try to keep her company, because it would be too hard on me and she doesn't require it. I spend some time with her and check in through the day. I wouldn't be able to get anything done if I spent too much time sitting with her, watching TV. (I am so grateful for TV. The Waltons keep her company.)

I work from home. I don't know if I could handle it if I had a job outside the home, then had to come home to do everything. That would be very hard. I'm glad you found this group. When I read some things, it makes me feel better to know I'm not alone with the things faced daily. Welcome!
Helpful Answer (4)
Report

Thank you! My mom gets 5 hrs per day caregiving from county. Tge other 3 mom pays. From what I have read on here we are not alone in sibling uninvolvement. Screened calls, not responding to messages, etc. It does help to read others' stories.
Helpful Answer (1)
Report

Sunnygirl1 i agree. I am now paying out of my pocket for occasional break on a saturday for 2-3 hours so i can go for a walk. JessieBelle i know what you mean. I go out to garden and it helps me so much. I just feel bad when mom is sitting alone because she can't do anything for herself. I love hiking and gardening. She can't sit up for half an hour without needing to lie down. Doctor appointments are a real challenge sometimes. I do feel very blessed to have this time to be there for her - she was ALWAYS there for me. My best friend. I miss that. But sometimes a clear moment comes over her and/or her sarcastic/witty humor comes through and i get a happy glimpse of the old gal in there. She can be a hoot sometimes. Thankful i found this site! I don't feel so alone.
Helpful Answer (1)
Report

dee1963, so the coffee cup incident does not happen again when you are in the garden you could carry a remote doorbell. This device has worked well for me when my 92 yr. old bedridden Mom needs anything. I attached the bell button to her bedrail with tape and carry the chime with me if I go outside or am reading in another room, etc. I can even put it in a purse and wear it. This is so powerful it works through walls and a couple of hundred feet. They are available at hardware stores and Lowe's and Home Depot. I think it was about $20 or $30. ....a lot cheaper probably than replacing windows.All you need to do is pop some batteries in it. It has 3 loudness settings. My Mom is 92 and bedridden since last June, so this has been a real life change for me as well. Hang in there! You are not alone. take it one day at a time, I find that helps me get through each day.
Helpful Answer (3)
Report

Great suggestion, Katie22! Thank you. I'll look into that. She had said she wanted to stay inside and take a nap. She sleeps a lot of the day on the sofa. I had told her I would be right in the yard where I could hear her and just yell when she needed me. I don't think she yelled loud enough or I'm losing my hearing. Scared the daylights of out all the dogs and my grandpup came running to me to alert me. Needless to say I didn't get much done in the gardens last year.
Helpful Answer (0)
Report

We have one of the buzzers (remote doorbells) and they are fantastic! I have basically moved in with my mother after my father died, and I stay upstairs with the chime next to my bed. Amazon sells them also.

As far as staying motivated, I do get a break during the day when I work and we have caregivers who stay until 8 pm to give me time to be with my husband. One of the caregivers gives me every other weekend off so I try and "refresh" at that time. It is difficult to balance your work life, home life, and family life. Good luck with it and I will be praying for you!
Helpful Answer (1)
Report

Oh and as far as neighbors, church family, etc. visiting or calling, that is a huge issue with me also. After Daddy died, we had plenty of food and visitors for about the first week, and after that, nothing. My mother would love to have some company other than myself and the caregivers! Just 15 minutes once a week (heck once a month even) would be nice for her. I just don't know how to ask the neighbors for it without sounding mean. When they say "Let me know if I can do anything" I don't think they mean it!
Helpful Answer (2)
Report

Savinggranny, I hear you! Actually my present caregivers and Mom's next door neighbor are wonderful ladies. Very good to mom. My brother (Mom's POA) comes over once in a great while and she gets the biggest smile on her face and just can't get enough of him hugging her. He stays 5 hours with her every 8-10 weeks or so, while I go out with my grown kids for dinner/theater. Not much of a break, but better than nothing. I have to get Mom up and dressed and on the sofa before the morning caregiver gets there because a.m. caregiver is 70 years old, kinda frail, and can't transfer mom. We've been through some REAL STINKERS for caregivers. Brought her on board when previous (totally unreliable and uncaring) caregiver quit afternoons with no notice. Scrambled to find someone we could afford. She can't get to Mom's til 8:30 and I am supposed to start work at 8, so can't get there til 9 now. I had to take a pay cut and use vacation/sick days to cover the hour I'm missing every day at work. We pay her a small wage and it gives her a little extra income and something to do every day. It's not ideal, but she is very reliable and good to mom. Turned out the previous caregiver did us a huge favor quitting afternoons with no notice! Quickly replaced her with our present 2 caregiving ladies that split the day - I actually had it in me to fire someone, though it did take me a few years! Yay, me! Now I never have to worry about call-offs or late show with a.m. or the afternoon caregiver. They spend time with Mom instead of sitting in the dining room with headphones on and leaving Mom to herself all day long. The afternoon caregiver is the neighbor lady's friend and I'm SO GRATEFUL that we brought her on a year ago. The previous caregivers almost gave me a nervous breakdown with their antics - trust me - you WOULD NOT believe some of the things they did. Everything is MUCH calmer and more peaceful now. Family is very quick to say "let me know if I can do anything". Uh, you could start by picking up my call, answering my text or email, call me when you're at the store and say "hey, does Ma need anything?". No, they don't worry about it. But one brother works in a retirement community and helps the elders on a personal level - once told me after helping someone move he felt that he was trying to make amends for not helping with Ma. HOW ABOUT YOU HELP WITH MA? Gosh. Not rocket science here, folks! Once I felt very ill, chest pain, etc. and felt I needed to go to hospital - I left urgent voicemail messages and sent texts - the only ones that responded to me were the chirping crickets. So I called my kids - they came and it turned out I was fine. Anyway, at the 5 year point I quit asking. Not worth the aggravation. They win.
Helpful Answer (2)
Report

My heart goes out to you. I am taking care of my MIL and FIL in my home. I am the primary one that does the day to day care and my husband takes care of the finances and doctor visits and insurance. We lap over and help each other out at times but mostly it is the way I stated. I really don't think I could do this all by myself. My husband is going to have hernia surgery in a few weeks and then I will have three to take care of while he recuperates. I know physically I can do this but mentally and emotionally I may just fall apart. I am walking a tightrope right now trying to hold my emotions together. I think what you are feeling is very normal and I'm sure there are people on here who can help us with suggestions in dealing with caregiver burnout. If I can be a help to you by just being a listening ear I will certainly be here to do that. Sometimes it helps just to have someone to listen to us without feeling like we are taking up there time with our complaining. Everyone on here understands what everyone else is going through. This certainly has been a god send to me. Good luck in trying to regain your "normal" and hope your mother and you can figure out something she can do to help pass the time. Just a thought. Have you tried earplugs and listening to old music from her earlier years or maybe an ebook? I have thought of that for my MIL and FIL but right now they are not interested. My FIL watches the tv all day and my MIL just sits there with him. With her last stage Alheimer's I don't think she is able to follow a story on a movie or tv show. She seems pretty satisfied just to sit there with her husband. Good luck with everything.
Helpful Answer (1)
Report

Thank you, Susiemc. Mom does enjoy old country music, so I turn that on sometimes. Trouble with tv and reading and audiobooks is that she can't follow along a lot, and often whatever is happening in the books becomes reality to her, albeit skewed. Really have to watch what's on tv. No news or action shows. Sometimes she thinks she's in the army, or she's won the lotto. You can't convince her otherwise, so I just go with it and redirect. Vascular dementia is horrible. Her vision is so bad that she often can't see the water glass in front of her. Due for another vision check. That's great that your husband is there for you. I manage all of mom's care except finances - brother is her POA. I'm 24/7 unless I'm at my full-time job. I'm a quiet keep to myself gal most of the time, and when I get home from work I just want to relax, but have to take care of mom. Thanks for being a listening ear...I'm here for you, too. Best wishes on husband's recuperation and taking care of everyone. Hope you can get some help.
Helpful Answer (0)
Report

Oh Dee, I understand how you are feeling. Years ago when my children were small and I was teaching school full time my mother and father became very illl and I had to step in and take care of them for years. First, helping out in their home. Then, find in home caregivers. And, yes, that was a terrible ordeal. Then, nursing home for my mother until her death. My dad had Alzheimer's and I had to keep close contact with him and help him out until he got to the point he could no longer take care of himself. There were lots of doctor appointments and ER visits and hospital stays with both of them. It was very hard on me physically, mentally, and emotionally during that time and caused me to have guilt that I wasn't able to spend more time with my small children. I would call my siblings and let them know what was happening with their parents. They always said, "Let me know if there is anything I can do." I would tell them that anything they could possibly do would be appreciated to take some of the load off of me. They never did do anything. I built up great resentment toward all of them. But, my parents have been gone now for years and I have been able to let go of that resentment and love my siblings again. However, I suppose I will never be able to forget how much I needed them to help me and how much my parents needed their help. I'm glad I was able to let go of the resentment because it was eating me up and causing me to be sad, and mad, and depressed. Now, I act as if nothing ever happened. And, they will say at times, "I know it was hard on you taking care of Mama and Daddy and I should have done more to help you."I say, "Yes, you should have." And then, I just let it go. On another subject, I sure wish I could find some caregivers that we could afford and trusted to sit with my MIL and FIL while my husband and I go out to eat sometimes. In the spring I want us to go over to the the beach to visit my daughter and grandchildren and hope to have someone in place by then that my MIL and FIL feel comfortable with and that we fully trust. I would like for us to be gone a week. We really need the time away and I'm really missing my grandchildren.
Helpful Answer (1)
Report

SusieMc, I know just how you feel. The resentment is there. I've almost lost my own house twice (I haven't spent a night there in 6 years because I'm with mom). Tried to sell it, but market plunged and that was that. Had to file bankruptcy last year, too. That was really hard on me. My son lives in my house now and takes care of it for me and pays the bills, so that's a huge relief. I really hope you find a couple of great caregivers and that you and your family have a wonderful vacation. You need that. I'm going to try to set up something so I can take a week off this summer and do something with my kids, both adults. I've missed a lot of time with them as college-age adults, and that makes me sad. I'm all they have. They and my mom are my life and my reason for being. Have a great time on the beach!
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter