Scared

rosecoloredglasses

Hi everybody. My loved one with Alzheimer's Disease is my dear mama and I am her main caretaker. I've posted a few times already in here and the support that I receive means more than any of you could possibly know. Todays discussion is just me talking about how scared I am about off this. I mean, when I was a kid and I thought "who will I be when I'm 25?" Let me tell you the answer was definitely not "stopping my life almost completely to take care of my mom because she got diagnosed with Alzheimer's Disease at the age of 58." I am so angry and scared all of the time, but I think the thing that gets me the most is the drowning guilt. My mom always seems to have some new ache and pain, some new anxiety, it's always something with her and I understand she cannot control what's happening to her at all; but I feel like I can't keep up. I have help from my spouse and my friend, but both of them work and go to school full time and can only do so much for her. I've been trying to mediate my own health on top of my mom's and it's almost impossible to do everything she requires. Recently she's been complaining of a "huge cavity," we're broke and don't have amazing insurance, so there are no dentists in our area that take our insurance! So that means I'd have to load my anxious mother up in to the car (it would also have to be a weekend cause I don't drive so my spouse or friend would have to take us) and take her almost an hour away repeating our daily plan over and over again and talking about how her mom didn't love her over and over again and so on and so forth. I want to rip my hair out every day I wake up and then I go to bed sobbing because none of this is her fault and I'm flooded with guilt. I feel like I'm never doing enough for her, I'm never doing enough for my spouse, I'm never doing enough for me. And it's only me who feels this way, thankfully I have many people telling me what a goof job I'm doing, but it all feels fake. I have the worst impostor syndrome of my life and I don't know to do about it. Therapy of course but when?? Most therapists aren't open on weekends, I can't do telehealth cause my mom would just sit in the doorway of my room trying to listen cause she's curious (that part is actually pretty adorable lol.) I don't know what I'm doing, ever, and I'm terrified. I don't even know what I'm looking for here, guess just some place to vent. Thank you all to those who took the time to read this, I'm wishing you and all of your families well.

Kmhl219

Hi! I just want to say that I can relate to your fears. I am 48, married with an 18 year old daughter and caring for my mother. It is not easy and the guilt is immense! I wish I had an answer for you but I pray that all of us navigate these uncharted waters the best way that we know how.

SusanB-dil

I think most of us 'here' would say we never expected to be caring for someone like 'this'. Even though DH and I are a little older than you are, we are pretty much just muddling through as best we can. We were just saying this morning, again, just how much 'this' is not her. If she really knew what she was like, she would be mortified. Agree, if not one thing, it's another. We just gotta take it one day, one step, at a time. ((HUGS))

@Kmhl219 welcome to 'here', but sorry for the reason.

Please take off that guilt. You didn't do this to your loved ones. Both of you - your mom is blessed to have you watching out for her... and no, it isn't easy by any means!

mabelgirl

were you able to get her to day center so you get much needed alone time? I can’t imagine at your age the many facets you are dealing with and my heart goes out to you. You are not an imposter but a trooper who might do well to take off your armor so others see your struggle. So what if mom listens into a telehealth call. I’m fairly certain the therapist would understand. You may find by letting others see your struggle they will help you beyond what you might expect. Have you looked into elderly services or Medicaid? I know when I do something concrete to help better my situation it always makes me feel better. Prayers for strength and some respite.

sandwichone123

No young adult should give up their own life to care for a parent with dementia. I realize not everyone agrees with that, but this is my opinion. There is no cure. You will not make her happy, but you will close off options in your own personal and professional life that will never open again. Do not allow guilt of situations you did not cause to control you. You parent either does have some economic power or qualifies for Medicaid or your state equivalent.

The imposter syndrome makes sense, because there is no "good job" that can be done here, so there is no way for you to feel you are achieving it. Look into support services, although I will tell you that for PWD under age 60 they are very limited, and get your mom on Medicaid.

Kmhl219

https://alzconnected.org/discussion/comment/223096#Comment_223096

Thank you so much for your kind words!

Lucy C

https://alzconnected.org/discussion/70635/scared

No amount of years or life experience can ever make this disease easy. You could be 50, and still feel that you don't know what you're doing. There are options for elder care, but few set parameters or safety nets.

Contact your local Area Agency on Aging, explain the situation, and ask to speak to a social worker who can give you advice. In simple point of fact, dementia care is too big of a job to be tackled by any one person, be they 25 or 45. Your support from your husband and friend is limited by factors beyond their control and yours. If your mother has no financial reserves, it will be necessary to get help from Medicaid. Once this is in place, start looking at facilities and getting on wait-lists. I'm sorry to say it, because most people do not want to hear this, but for your own health and survival, you will have to work on getting placement.

If your mother is resistant to placement, and you do not have DPOA, you may have to pursue guardianship through a court, but hopefully there will be no need for that extreme. If there are any questions regarding your legal right to place her, contact an elder law attorney.

Once the painful, stressful, and guilt-inducing process of placing her is settled, you will then find time to get the help and therapy that you need for peace of mind, and begin your own recovery from trauma. Yes, this is trauma. There is no other word for it.

Hugs