I've been caring for my mother, in various capacities, since my parents divorced some 35 years ago. She never drove and was not an independent person. I became the one she relied on. I wanted my independence but needed her "permission" that she'd be ok if I lived on my own. Of course it never happened and I put her needs before mine. Can't change that now. We've always lived together. About 8 years ago, she was needing more help than I could provide so I had caregivers in the house. I wasn't working at the time. Over 3 years ago, I started working full time and because my mother was on state assistance, I had caregivers throughout the week and weekends but no overnight care which really wasn't needed. However, I've been burned out for many years and was caring for her this long out of responsibility, not desire. She is 96 but looks much younger.
She has dementia but not an extreme case. Over the past several months, I have been up with her during many nights sometimes getting only 1-2 hours of sleep. I was beyond exhausted. She is a very needy person and had 24/7 care with people taking care of all her needs. I worked very hard at keeping her as well as possible because if she was well, then it would be better on me. If she got sick, or had other problems, then it would be way more work for me. It was exhausting trying to keep her well over the years as she would resist doing anything to help herself. I would want her to do strengthening moves to get up and down the stairs to stay strong, brush her teeth so she doesn't get cavities especially since she likes to eat candy, take vitamins to keep her immune system up, and much much more. But all was met with resistance. But again, if I didn't push these things and problems would arise, it would be on me to take care of so I pushed. I did manage to keep her well most of the time.
She ended up in the hospital 3 weeks ago with 2 infections and now is in rehab. She feels very alone and lonely as she certainly doesn't have someone with her at all times. The food isn't that great. She has very specific tastes and the facility can not cater to those tastes. She's been crying out "help me, help me" and "nurse nurse" constantly since she's been there. They finally got her on a regular dose of meds (which didn't work and had to be changed) but very often she refuses to take them. With all of these changes, how can a 96 year old with slight dementia cope? She doesn't have the ability to do so like we can.
I am having a horrible time with all of this. While I don't think I can care for her anymore at home (and really don't want to), I don't know how to come to terms with that decision and how to emotionally deal with her in an environment completely opposite of what she has been provided with for so many years. She essentially was the person who I cared for over 35 years. Even though it was depleting, it's not something I can just let go of easily. I'm the one who always made things as best as possible for her. How can she possibly make things as best as possible for herself? Given her state of being, she really can't.
I feel like I can't be ok unless she's ok and realistically that may not happen.
There's so much more to this as our lives have been so intertwined and even though I want my freedom, how can I feel free with her discontent?
I need help and would greatly appreciate your feedback!
Thank you!
MargaretMcken, I understand what you're saying but I truly don't want to do what I've been doing for 1 minute longer. I've been mentally done years ago. I just can't turn off the switch right away which is why I'm looking for feedback from everyone. Seeing her in her current state of distress isn't easy but I'm willing and wanting to figure out how I can cope and applying what others have said is helping.
My head knows I can't bring her home because I know I just can't do it anymore. I want my freedom in so many ways! Having the heart catch up with the mind and accepting that decision though is a process.
Thank you again to everyone for your caring responses. As with everything in life, it's a one day at a time approach.
:o)
You can't fix a 96 year old mother's discontent, especially when dementia and mass confusion is involved. Nor is it your job to continue carrying this woman on your nearly broken back any longer. Or she may outlive you, as sometimes happens in these cases where a daughter has given up her entire life for her mother who's refused to be an adult. Bearing this enormous burden for another year or month or week may just be the final nail in YOUR coffin, God forbid, and then what happens to mother?
Think about this realistically instead of emotionally. What would you advise some other poor woman in your shoes to do? Take THAT advice and leave mother be, where she is, in capable hands where she's safe and well. And then allow yourself to be okay. Your happiness and well being should never be contingent upon HERS! You're a separate entity and entitled to live the life God gave you! Have at it!
I know I have to take care of me and I do deserve that but part of that is finding a way to accept her extreme discontent and acting out. How do I be ok with the fact that she was removed from her comfort place, her safety net, having her needs met? She's 96 and can't adjust as well. Plus, it's certainly understandable that she'd be yelling out that she doesn't want to be there and wants to go home. I'm sure I'd be doing the same.
I am talking with a dementia counselor, an aging representative and becoming more involved in support groups. I am trying to get through this but just keep thinking about how distressed she is. UGH!!!
I'm sorry it took a little bit to respond. I've been sick but hopefully getting better.
Thanks again for your all of your support!
Realistically, you cannot hold yourself responsible for another's happiness. You've created an environment for your mom that has been a cushion from most of the bumps in life, but in extreme old age, she now has other needs as well.
Have you sought a consult with a geriatric psychiatrist? Meds might provide a bit of a cushion against the anxiety and agitation she is feeling-- seeing her calmer might be a way for you to feel better about her new environment.
She's experiencing delirium in the hospital which is very common. Dementia patients have a tough time being in unfamiliar surroundings and they can really freak out.
Chances are good that Mom won't bounce back to where she was, so perhaps she needs full-time placement where she'll get the care you cannot give. That doesn't mean you aren't caring for her -- you are seeing to it that she gets the care she needs.
Now you need to start seeing to your own care. You've made an enormous sacrifice, and it's going to take you some time to figure out what you want to do with your life. Take that time. Get some therapy or a life coach and put yourself first, because you deserve it.
Mom will be fine, and you can still care for her without doing all the heavy lifting.
Your mother is in a safe place. Your mother is looked after and cared for. True, not how you would do it, but at 96, there isn’t much time left. What you have now is an opportunity to spend time with her but have it not be ALL of your life.
Rest. Recuperate. And then, when you’re ready, explore. Grow. Change. Take chances. To move forward, you need to look beyond your role as sole caregiver of your mother. Find interests, hobbies, read books. Meet people, travel. Open a new window. Once you do that, you can accept that your sole purpose on this earth isn’t making her happy. Even my children, my beautiful babies, I am not that to them. I am there to challenge them. Care for them. Push them to try new things, and grow into wonderful men and fathers and husbands one day. To go beyond me.
Taking time for yourself doesn’t mean you love her less. It’s just time to put you first.