Caregiver looking for coping mechanisms to deal with stress and guilt.

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Hi. I feel like i'm at a breaking point and after googling support groups I came across this board. It seems to be the most friendly of the bunch so I thought i'd give it a shot. I appreciate you taking the time to read this..

I'm a 29 yr old female and took care of my grandmother in her home for over a year before she passed away in August 2011. She was bedridden (We had a hospital bed in the den) which meant she needed complete and total care... feeding, bathing, turning every 2 hrs to prevent bed sores, diaper changes, etc. After she passed away we noticed a sudden change in my 93 yr old grandpa (as i understand is common) I moved two houses down from him in order to be closer and to be able to help out more (my parents also live nearby) Last week he fell and sustained two large gashes on his forehead but thankfully no broken bones. Since then he just has not been himself. Medically, everything has checked out just fine. He's just much slower, confused much more often and is needing assistance for everyday tasks such as brushing his teeth or taking his (presorted) pills. I've been spending my days and nights here every since the fall and I find myself feeling overwhelmed thinking of what lies ahead. I bounce back and forth between the extreme sadness of seeing him decline so rapidly and the guilt I feel when I start to get discouraged about going through this again. As challenging as this is, an assisted living facility just isn't an option. I'd never have the heart to take him from the home he shared with my grandma for 64 years unless it was absolutely medically necessary. However, given his current condition, I may need to give up my apt. and move in with him. I suppose i'm looking for suggestions on coping mechanisms you all might use? Ways to deal with the guilt when I start to feel like "why me"? Again, thanks for taking the time to read this.. i'd appreciate any feedback

17 Comments

I think that the first thing to do is to accept that feeling guilty is kind of the default state of mind for caregivers. If you move in with him you will inevitably get discouraged sometimes and you will feel guilty about that (and a hundred other things that you will experience.) If you need to place him in a care center, you will feel guilty about that (even if is the best or only solution). If you don't give up your apartment and try to care for him without living with him you will feel guilty if he falls when you are not with him (or when you are with him!)

There is just no being a caregiver without feeling some guilt. If you avoided guilt while caring for your grandmother you are very unusual!

The point is that you can't let guilt or fear of feeling guilty control your decisions. You need to be able to push the guilt into the background and move forward based on your best judgment of what will be best for your grandfather AND for you.

Do you work? Who will look after GF while you are at work? Do you have a social life? Special friends? How will you maintain your own life while living with GF?

If you decide to move into GF's house, plan very carefully how you will have regular respite. Can your parents be with GF one night a week and one day per weekend? Can GF afford to pay for in-home help to relieve you. Nobody can be a 24/7/354 caregiver and retain their sanity. Plan ahead for this necessity.

Good luck! You are obviously a very caring, compassionate person. Don't lose sight of your own needs. You deserve to have a life of your own, too.
Okay, if you're not going to ask it...why you? Who made you the designated care giver in your family? Is your grandfather the parent of one of your parents? What is their role in this? Are supposed to give up your life to care for him? Is that fair? There's an old saying, "many hands make light work". Are you going to put your life on hold until grandfather passes? Then are your parents going to expect you to care for them. Yes, you are compassionate and kind, but don't be a doormat! Sorry if this sounds harsh, but you need to make an elightented decision in order to do this well, and, as Jeanne points out above, sets some bounderies and limits. Hugs!
Hi Krissyness,
Can you provide more details about your parents role? Do you all share in his care? As ba8alou asked, how did your grandfather become your responsibility with your parents nearby? Any additional details are appreciated.
Krissyness, all of these comments make sense. I have done some caregiving off and on as I could over recent years, (my last parent, my mother passed away last month) but would never have made the sacrifices that you have. As has been asked, why are you the only one responsible for your GF and GM before? You are attempting something that is virtually impossible for one person to bear alone. Please contact elder or aging services in your community for some help and advice and get yourself some assistance. Don't go it alone! Whatever guilt you may have will come and go, but you can work through that and may need to get some counseling for yourself through community services. Take care, Nancy
I agree with all the comments here. Definately, don't do it alone. I made the mistake of starting out pretty much alone except for a respite for one day a week from a caregiving agency here. Big mistake! My MIL lives with us, and she is the one needing the constant caregiving because of her disease. At first, I tried to take on everything myself. I am the one my family looks to to be compassionate and do the right thing most of the time, but I ended up having a range of emotions that I felt so guilty about ranging from anger, bitterness at other family members for not helping like they should, frustration, and depression, just to name a few. I didn't want to do it alone, but I felt as though nobody would really help me, which made me so angry at other family. I ended up seeking counseling for myself, talking to my family members to explain (maybe not in such a gentle way) that I need help and don't deserve to have to take on the role of caring for their mother by myself. Honestly, I was at a point where I literally wanted to leave and go stay with my own mother. I didn't want to abandon my family though, so I knew I had to talk to them and get them to help. I still take on most of their mom's care, but they do help me with changing her. I figured out the things I could do myself and the things I absolutely had to have help with and set up those boundaries with them. You have to set boundaries and stick with them, things you will and won't do. It's okay to do this because otherwise you will completely lose what sanity you have left. We have hospice helping with her now, which is also a God send. They even bring her supplies like diapers, soaps, and other medically necessary things, and that saves us a lot of money.

Whatever you decide to do, please don't go it alone. You deserve help and not to have the whole task of taking care of your grandfather placed on your shoulders. God bless you. I hope you get all the help you need.
First, yes, don't hesitate to involve other family members, if they live near enough to pitch in. Even if there are others around - your parents, siblings, even cousins - and they don't take an equal share, if they simply give you a couple of evenings off every week or promise to spend the day with your GF if you want to take a whole day off, that'd be good. Every little bit helps.

I'm the main caretaker for my mom, as her siblings live in other states (far enough away that they have to fly in to see her) and I'm her only child. My husband is my only support in this. He takes her to lunch so I can sneak in and clean her apartment (she doesn't clean but becomes RABID in her denials that she isn't cleaning and won't let anyone help) and he'll sit and talk with her when I'm at the end of my rope and can't even look at her anymore (she has a very passive-aggressive, woe-is-me attitude that she's had all her life, but that is amplified now). The bottom line, you need help. Don't throw your life away. If your GF had his wits about him, he wouldn't expect you to do that. Nobody who loves you would expect that. If you move in with him, have a plan for getting your life back on track as soon as he's gone - put some money away for a security deposit on a new place, be ready. Knowing that's out there may help you get through the days in the meantime. If you can keep your own place - so you can get away - that'd be best, but that may not be possible if there is no one else to look after him and if he needs round-the-clock supervision.

Does he qualify for Medicaid? You can contact your local Department of Aging to find out what services he needs (they send someone in to assess the situation) and and what services (in-home nurses stopping by to give pills, help with household tasks) he qualifies for that your state can provide. He's paid into the system for 93 years, he can get something back now, right?

Most of all, take care of yourself. He didn't have kids so they could spend their lives caring for him, and he certainly didn't expect his granddaughter to give up her life for him. It's nice to help him stay in a place he wants to be - at home - but it shouldn't come at the expense of your life. Yes, you have a lot of years ahead of you - you're only 29 - but these are also the years most people spend building their own lives, and you have already lost time doing that, caring for your grandmother. Something she wouldn't have wanted you to do, either.

You're a good person. Don't let the guilt get to you. Even the most saintly, self-sacrificing person can't be everywhere and everything to everyone. You're doing your best, and feeling overwhelmed, feeling resentment, feeling angry, tired, etc... - they're all natural, reasonable, expected emotions. Give yourself a break.
Krissyness, you need help in caring for your grandfather and the good news is, there IS help out there. Depending on how big of a town or city you live in, there are non-profit organizations that offer a variety of programs to/for the elderly.

You didn't mention if getting a in-home caretaker is an option here. It would largely depend on if your grandfather 1.) would allow it and be ok with it, and 2.) if he can afford this. You can find postings on craigslist and in newspapers for people who are skilled home health care workers, or you can contact an agency that places in-home care workers. In my experience, you would do better to "hand-pick" a care worker directly instead of allowing agency to send whomever to care for your grandfather. This doesn't have to be a full-time thing - it could be just for a few hours a day. My grandmother even had a care worker that came for only one hour, 3x per week, who bathed her. Whatever would suit the level of care that your grandfather currently requires. I think that if you got much needed and deserved help, in form of an in-home worker and tapping into free programs for elderly, you might feel a little less stressed and depressed about the situation.
One thing that has gotten me through, as I gave up my once free-as-a-bird glamorous lifestyle for one of constant babysitting, worrying, and guilt... not to mention all the physical work that just leaves you exhausted at the end of every day... is the sense that I am "doing the right thing." Be proud of yourself for being such a great granddaughter. Unfortunately those we care for usually do not understand the huge sacrifices we make for them, so acknowledge this to yourself. You are choosing to do something that is so completely selfless and shows great strength of character and ability to empathize and love. Lol, I dunno... I think caregivers have to be the best f'ing human beings on the planet, pretty much. Good luck and best wishes.
Krissy, I am a new caregiver and it happened so fast I didn't know what hit me. Because I already shared a home with my Mother, I was the obvious choice to care for her. I always knew this would happen and I suppose deep down I didn't mind looking after her when she needed me most. However, I was not prepared for all that goes into caring for someone who cannot do anything for themselves. I understand about your guilt as I sometimes feel like I don't want to do this, why me? I sometimes feel angry at her for asking so much of me, I get frustrated at my family because I think they don't really know just how much it takes to care for her. Sometimes I feel like I just want to get out and forget about the whole thing, etc. Basically, I think it's important to accept that having these feelings are normal for those in our situation. I agree that you should research respite care in your area... I am in Florida and looking into this myself as I need to care for myself otherwise I won't be able to care for her anymore.

You are a wonderful person for doing this... as well as all the others caregivers on this site. You are all Angels. I know this period is supposed to be a happy one and Christmas is my favorite time of year. Although, this year is a sad one, my Mommy is still with us and I need to make it a happy one for her, for me, for all of us.

Be blessed everyone.
I think it's important to remember that while many people look upon caregivers as angels, we're all just people. And sometimes the people we're caring for are not nice, are uncooperative, fight us at every turn, resist getting outside help (which would make it easier on us, but hey, what the heck, right?), etc... and many of us didn't choose the role. So feeling like running away or like it's all too much is par for the course.

Don't beat yourself up for not always liking the job or liking the person you're caring for. People with Alzheimer's can change a lot - or their personality traits become magnified, so someone who could be a bit sarcastic before is downright nasty now. Or someone who was prone to being a little vain and selfish at times is now like a big spoiled toddler. It's not a fun job, and those who have someone sweet and cooperative to care for are very fortunate. Not that caring for someone sweet and cooperative isn't hard work, too - it's just less emotionally draining, I think.

I don't know if your Grandfather is a pleasant person or not Krissy, and I hope he is. He's lucky to have you and I hope you can get some help - from family, from an agency, from the state, whomever. Just don't turn down help, because you need time for yourself. You deserve it! :-D
Krissy, could you tell us a little more about yourself beyond your age. You are at an age when you need to be building for the rest of your life. I'm more concerned about you than I am about your gf, to tell the truth.

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