I have been helping care for my mom who has been on home hospice for the last couple of months. She has been declining in health for the last 7 or so years due to Parkinson's disease, and was diagnosed with cancer prior to being put on home hospice. At this point, she is bedridden and pretty much needs everything done for her, from feeding to changing depends. Her spirits are very low, she is often upset and cries a lot.
For the last few years, I have been struggling with anxiety and severe depression (which I am currently in treatment for). I often feel empty and emotionless/numb. I haven't felt very upset about the state my mom is currently in, and it makes me feel like a horrible person. I continue to just feel numb as I care for her. I'm not sure if it is because I have become so accustomed to my mom being sick for so many years. Or if it is just part of the depression. Or autopilot mode. Or if I've become this horrible, careless person. My mom can also be difficult to deal with at times, and I often find myself feeling frustrated with her...which makes me feel very guilty.
My dad and I take shifts caring for her. She usually needs caring for through the night as well (we tried 3 different night-time care aids to help us but my mom refused all of them). I care for her Friday nights til Sunday evenings, and Tuesday nights til Wednesday evening. I feel like I should be there more, but between lack of sleep and her frequent needs, I feel like I can't handle more than that.
Has anyone else experienced this "lack of feeling" toward their loved one, as well as frustration?
Right now you are "doing the task" of caring. The mind and body usually just go into action mode and you are in survival mode. Don't feel you aren't normal or should be different.
I hope you can find a hobby or get to a movie or read a book once in awhile for your own well deserved health.
Mom refusing aids is not helping. You and your dad may have to give her an ultimatium - night aids or you go to a health care facility ( even if you might no follow through- it is worth the possibility she allows it)
Is there a senior county agency that you can reach out to for at least information on any resource where you can get a break? A church that may offer a half hour visit from a member/minister so you can take a walk or watch a movie?
I am now in counseling and was just expressing my fear that when mom is gone I will feel guilty that I didn't do a good enough job. My counselor asked me what I could do to prevent the guilt. I have a hard time enjoying my mom's company. She is very social and would love to talk and have lengthy conversations, Because of some of the things she has said and the way she behaves, I find this very difficult to do. If I express my feelings to her she tells me I'm too sensitive.
So I find myself on auto-pilot being as caring and polite as I can be. I wish I could have a more lighthearted relationship with her, but I find myself stuffing my feelings down and going on with my day.
Know that you are perfectly normal, a very caring person, and not alone. Caregiving is one of the hardest things to do.
Find time to do what you love...reading, gardening, exercising, sewing, crafts...whatever it is that makes you feel content.
God Bless you,
So sorry for what you are going through and what you family is going through.
I don't have any answers except to suggest taking as good of care of yourself as you can and certainly to know that you are the exact opposite of an uncaring person.
Take care.
You and your dad need help. You need to hire a caregiver or find a care home and unfortunately, your mum is not in a place where she can refuse this. She is not the decision-maker in this.
Your roles need to switch to being companionship roles and in finding yourself some quality of life, maybe you can share that with her.
I have seen people say this before on here and I think it is sage advice.. put your own oxygen mask on first.
* You and your dad need to agree that you need to hire caregivers PERIOD. Your mom needs them (and you/your dad). You have to make decisions that serve her best interest, and the health of you and your dad to 'keep going.' If you burn out, as it sounds like you have / getting there, you will not be able to care for her at all and need/rely on caregivers.
* Do what you need to do. Do not argue with your mom. Tell her you understand how she feels. Then hire people. You have to - to survive. Do not wait until you have a breakdown.
* Ask your healthcare provider about how you feel. Since you are on depression meds, hopefully you can get some medical professional support.
- I would also suggest you research / read Andrew Weil MD website or purchase his book(s). He is holistic/focus on preventative healthcare and an MD. Get his DVDs or CDs. He will help you understand what you need to do - and how to take care of yourself.
Gena / Touch Matters
You sound like you can use a break. Is there any way to get live in help for a few days or maybe a week, so that you can take care of you?
At some point, your mom’s ability to refuse care can’t be her choice anymore. You and your dad should talk about that. The added caregivers are as much for your emotional health as it is for your mom.
Once I found someone I trusted to hire and come in, I simply told my wife that “Linda” is going to come and be here while I run to the store. Over time, my wife accepted Linda as a personal friend who sat and read to her, told her stories, talked, etc. You can move into using a caregiver slowly and gently. And you will see how it benefits everybody. You are not a bad person. These are new experiences that we have to walk through carefully. Good luck and God bless you.
85 and in fair health, low mobility by her choice, no hobbies or interests. She refuses to socialize with the new friends at her senior community. She refuses to call old friends and check in.
Mom has part time day and evening sitters who she adores.
I am her target for frustration, boredom and anything else.
I enjoy my own family and help to care for my six young grandchildren.
I also help care for my husband's 92 year old aunt and help my husband with his business.
Mom tells the world I am micromanaging her life, am controlling and mean. She has dementia and I know her brain is not well. It still is hard to constantly hear this.
In any case, it is hard to take care of someone else when you do not want to.
Why do you feel guilty for this? Do you have your own passions and dreams?
If so, go after them and you can still care for your mom while pursuing your own life. Stopping your life to help your mom, is not good for you or her. You need to feel happy and healthy. Taking care of someone else and ignoring yourself is not helpful in anyway. Live your life before you get old too and can't do anything but stay home.
It is exhausting to try and run back and forth. I did this with my dad until he passed because he refused all doctor's advice.
If you are on any kind of depression meds, they can help you feel indifferent to your mom's condition. Also, maybe your feelings are your way of dealing with it.
I would install a camera in her bedroom so you can check on her whenever you wanted 24 7and I would hire Night Caregivers and sleep with ear plugs. Your mom will end up allowing the Caregivers if you explain to her that for you to be able to function and take care if her during the day, you need your sleep at night, then just stay out of your mom's room after saying hood night.
I use Nest Cameras fir my 97 yr old Dad that is living in his own house with 24 7 Caregivers
Sometimes it helps to mentally take a step back and see your situation as part of the human journey. "This is what people have done since the beginning of humanity."
You are not a horrible person.