Is anyone else here a caregiver to another person while you have Fibro yourself?
I ask because I've hit a close-to-breaking point. I have Fibro and am also a caregiver to my mom, who's disabled with several problems. Lately, she's gotten a lot worse, and I fear it's at the point where I just can't do enough to help her anymore. Part of me is dreading the discussion, but we need to talk about Assisted Living. I don't want her to leave, but....
She's fallen a few times, gets forgetful or confused without her O2, but can walk with someone nearby. I have gotten to the point with my pain and exhaustion and other symptoms that I can't get much rest while I take care of her, which make things worse.... endless loop. I find that sometimes she hasn't eaten, and I don't fix the healthiest of meals because I'm so blankety-blanking tired when I get home. Some days, I choose between getting up from the couch every few minutes to see what she wants and the housecleaning, and of course, the housecleaning suffers. Which doesn't make a good environment for her and makes me feel horrible about the place.
Does anyone have similar problems? It's so hard some days to not feel guilty and feel like I'm whining or being lazy, when I really can't do any more. But she's my mom. I love her and want to do everything I can for her. I'm just really afraid I can't for much longer. I just want her to be safe and cared for and watched over.
I am at the same point. My mother is 64 and has several health problems and is living with me I hired a lady to stay from 8 till 2 Monday thru Friday so I could rest some on my days off but I receive my paycheck every 2 weeks and it takes one of them to pay her to stay and the other to pay bills. moms check goes for her meds and food she doesn't have insurance till November. I have friends that work at assisted living and most of them are great it is a hard decision to make. I do not have that option as I cannot afford it. I feel guilty all the time. I will be thinking of you and wish you the best.
Thank you, I wish you the best as well. Medicaid will pay for some long-term care, so we have to see what will work. I do feel guilty, but it's just so much safer and better care than I can do anymore.
When you have fibro it's hard to care properly for yourself. You have to prioritize which means that some things just aren't going to get done. Often it is housework. We simply don't have enough energy. You say that you can't fix the proper meals "when you get home" so I assume that you must be working.
Oh my goodness Meg!! When you get home(from work) your body certainly needs rest.........on the couch where you can just relax, but you can't because of your mother. And you want the best of care for your mother. I can understand that you feel guilty, but you are certainly at the breaking point. Having your mother in assisted living sounds sensible to me. You are not abandoning your mother but rather you are making the best decision for the two of you.
Thank you! That's pretty much the hard decision I've come to. I used to recuperate by laying on the couch for an hour or so, yes. Can't even get that now without having to do stuff. Yet I can't afford to lose my job. It's a downward spiral and I need to fix it. Thank you for understanding,
I can relate to you. I worked the graveyard shift for 22 years and took care of my mom that was living with and dying of COPD. My work hours were killing me; each time I came home I wondered if this was the day I would find my mom dead. I was a lousy sleeper because of the Fibro, crazy schedule, and I always got up to check on my mom. It was very very hard but I knew that she wanted to stay in our apartment and I wanted to give her peace of mind despite all of my hardships. It was hard to do meals but luckily she didn't have much of an appetite and I got her things that she could make. I would bring in some fast food when she had a craving. I ran myself ragged between my job, my mom and helping my son and his young family. My mom passed on the year they finally diagnosed me with Fibro instead of just Chronic pain. Despite the hell I felt I was in trying to wear a cape and be superwoman; my mom always felt that I was doing plenty for her. I thought often it was minimal. I would give anything to go back to those days; miss her and I knew what was expected of me. Now I have too much times on my hands to feel every single friggen pain I have. lol ouchie. Don't be hard on yourself you are doing your best. Find fast and easy stuff that you can prepare when you got even a little energy. If you feel that she needs more than you can give her then do what you must do. No guilt; you will still be near her and see her when you are more rested. Good luck with your decisions; take care of you and give your mom a hug from me; I miss mine so much. take care...Sissy
Thank you. This board has so many people who understand. I have a significant other, but it's so nice to talk with people who are actually living my experience too. I'll give her a gentle hug. Thank you so much.
As an update to all: We've had the assisted living discussion now, and she's actually very willing and ready, so we'll start the process of how to find a place. I do feel so much relief that it went well.
I had to reply to this as I have a mother who is 88. She now resides in an assistance type community with her own place.. She used to live with me and then my sister. This was the best thing we could have done for her is to let her go.. It gave her the independence she was used to.It allowed her to be with others and she loves to socialize. She is now calling bingo for other seniors and helping them in daily living. Everything was so good to do this. If your mother is in her right mind or near as possible as can be. Let her do this. Now my father was a VETERAN and somehow nowadays they cater to this for the living spouses and she got a discount and special rates based according to her meagerly income. Now I can attend to my self with the fibro knowing my mother has the care and a place to live.
Your last sentence says it all. Actually the last 3 sum up your situation completely. You want what's best for your mom but because of her deteriorating condition plus your illness, it's getting harder and harder to provide it for her. That's completely understandable for ANYONE living with an impaired elder person, let alone being a caretaker with fibro. I used to work at nursing homes and assisted living facilities and the problems that family members faced were exhaustion and guilt. After awhile almost everyone in your situation hits a brick wall, because the elder person is aging and changing physically and emotionally.
I think it would be smart of you to look into assisted living facilities to see which ones you like. I think the realistic side of you knows its coming, wile the emotional side wants to put it off out of guilt. I've not had to do it myself but dealt with a lot of guilty-feeling relatives in my job. It was hard for them but they felt relief when they saw their relative settling in. The truth is that dealing with someone with physical and memory deficits is exhausting, even for people who aren't ill. They're so wrapped into caring for and worrying about the elder that they forget to care of themselves, which leaves them quite vulnerable health-wise.
If you decide to go the assisted living route, here are a few tips: Weekends are usually the days where help is limited, so its a good time to see how the facility handles this challenge. Its also a good idea to eat a meal there to see if the food the residents eat is satisfactory. If you like a place, you could bring your mom there to see how she likes it. You can also request an activities calendar to see what's offered to the residents. I know in nursing homes that one way of determining the level of care is to see how long a resident has to wait before being toileted but I don't think you'd find that in assisted living. You could also ask some of the residents how they like living there because you know someone who might want to live there. It sounds like a lot but it doesn't take much time to do these things. Also check for the smell of urine, as less appealing homes sometimes don't toilet or clean residents enough. Also check to see if the residents have clean nails and clean and combed hair. These little things can speak volumes about the care of a resident.
I wish you the very best in making your decision. I know it's not an easy one at all. But in the end you have to do what's best for your mom health-wise and for you, too.
Something else. and it all depends on your mothers menal and physical health. My 88 YO mom lives in her own Apartment. She has emergency call buttons all over the house where she can reach. She also has her necklace with the panic button on it, but she lives alone. We (my sister and I ) chipped in financially, just a bit (a $100.00 each a month to cover what medicare didn't for home health) and 5 days a week, just a couple of hours a day, someone (Maria) comes in and makes sure she has a few meals in the fridge prepared and this lil gal helps her clean. She pretty much makes her do it and supervises. The caregiver does her cooking and makes meals in a microwave trays ahead of time so all she has to do is heat it up. This is what My mother fails to do.. remember to eat and she is very tiny so it doesn't take much. And she forgets to eat healthy, so our Maria has trained her when to eat and WE set an alarm on her computer and the words come up, mom its time to have breakfast. And it also has the time and date and day. So we do the person, place and time thing. Yes I set it up and showed Maria how to manage it. It was a great idea. We also keep in contact by phone and I have a magic jack computer phone system tween us so she can call or I, as many times as needed. Im usually home. OUr caregiver also does her shopping with her and laundry. So see she is not really alone.And she is surrounded by people who are a lot worse off than her and feels the need to be needed.. and across the small street is the larger assistance living geriatric building. There is full time workers and nurses there. So if you decide you want to go this route... check around. I wish you luck.
Thanks, Petunia. I consider my life very lucky, as I not only work in health insurance, but I was a nurses aide years ago in a nursing home. Not everyone knows those little things to look for, including dust swept into corners, less than clean bathrooms, food debris, etc. I will turn a very critical eye on my mom's options, believe me. The sense of relief is odd, but I feel less guilt because she said she was considering it herself. I'm glad I live in Seattle, where there are lots of options around.
Thank you! I like the reminder things. I want a place where she can have her computer, as she does love certain games and has a few international friends she'll want to keep in touch with. But I'm a geek, so I could set those things up on her computer very easily. :)
Yes SeattleMeg, I can relate. This is a very stressful time for us to go through. And being the care-giver for Mom is uber-difficult. I just went through this, first with my dear Dad and then with my Mom. It was when I was juggling doctors appointments, grocery shopping, full time job and home/husband that I began to have fibromyalgia symptoms. This was 2006, when it started. It blossomed from there! Don't misunderstand, because I would never want it to sound like I blame them in any way. It is just a fact of life! Our parents age and we care for them unless they have made other arrangements.
If you have any programs in your area that provide help at home you might be able to access that through your county aging and disability services office. Get as much help on board as you can. If your Mom is in a position where she can go into an assisted living facility then that is a choice you and she need to make. She can probably see how this is taking a toll on you. She may welcome the chance to give you some relief. Wouldn't it be nice if you could go visit her and be a loving and rested daughter?
I always get so concerned when I see someone in your position because I know how terribly difficult it is for our bodies and our hearts. I'll be saying some prayers for you and for your dear Mom.
I just read your next posts. Wonderful news. I am so relieved for you. I know you will be so much better off this way. Oh, your Mom has done such a good thing. And you are doing great by her.
Meg, I have the same issues. You are not alone. I have fibro AND Addison's which means along with the typical fibro issues, my stress system doesn't work. I am MARRIED to a man with severe ADHD who forgets everything and then wants to argue with me about how he does remember. I feel like I'm wrestling constantly and always exhausted.
I ran a business up to a few years ago until the economy tanked and I had a metabolic meltdown from worry and stress. Our financial issues grew and grew while I was unable to work. Now I work from home and try and work with my husband who is particularly moody from how many hours he is having to work to try and make up my lost income.
Things are hard. His cognitive issues are only compounded by the stress. His anger, increased forgetfulness and frustration compound my stress, my confusion and my pain.
I am here. You can talk to me at any time. In fact, I'm looking for somewhere to post my daily frustrations, like a journal, to try and let them go. Let's do that here.
On a good note, we got a window A/C unit yesterday. We've been living without A/C all summer. Having the cool air should improve things. I started magnesium before bed last night. Between being overly tired, having the cool air and maybe the magnesium I sleft better than I have in weeks and weeks!
Congrats on the A/C, I'm jealous at the moment. LOL I'm sorry to hear about how hard your husband's issues can complicate your own. It's an endless spiral sometimes, isn't it? It's bad, so you feel bad, which makes it worse, which makes you feel worse, and so on. I sometimes wonder if it'll stop. I'm hoping that after mom gets into assisted living, I'll be able to rest a lot more and feel a little better.
Feel free to talk anytime yourself. My significant other has OCD, So I'm familiar with frustration.
Me again. I had one of your days ('our days') yesterday. I wrote a blog post about my Sunday.
Yesterday was a day of exhaustion. It's true. How can others understand that the exhaustion goes so deep that even feeding oneself is impossible. If it's not already cooked or something I can eat as-is, I don't eat. I have eggs and veggies, as an example, but putting the veggies into the pan, along with the egg, to make a simple omelet was more than I could do yesterday.
My husband has no food in the refrigerator and 2 boxes of family-sized pastas in the freezer. Do you think he can think for himself to pull one out and read the cooking instructions (they are microwavable), so he doesn't eat.
I stopped cleaning as well as I used to as well. The place is dark as we have thick blankets on the windows because our A/C went out and so I'm pretty sure that once the sunlight comes in and I see how much dirt is everywhere I will start crying. At this point, learning self-love is the important lesson, not cleaning the house. I love myself enough to let it go and to take care of myself. I'm grateful for the darkness vs obsessing over the A/C. All is well.
I am here. I have no idea how you work outside of the house. I work from home and am so grateful that I am able to earn, at least, a part-time income.
TO ALL OF YOU, my heart is with you. My mother is married to a man 20 years her junior so we suppose he'll be able to take care of her. How do you all do it. I am so happy for this board where we can share and provide comfort to one another.