Caregiver Hopelessness

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I feel like life is passing me by and my life is not "normal." I work my full-time job and when I come home from work, I care for my mom and provide her with companionship. On weekends I have in-home help but even that is very depressing. Spring is coming. My life feels very depressed. My mother will soon be 86 and has no dementia. She lives with me and my roommate. She can no longer live alone. Her home is in Pennsylvania and I reside in Maryland so logistically I had to have my mother move in with us since I still work and my career is very important to me. When the in-home help leaves, I begin to feel down. I don't enjoy spending long periods of time with my mother in her room as she and I do not like the same TV shows and then there is her hearing deficit which I am working on. She will be getting hearing aides even though she has fought me on this issue. I tell her it is unfair to think she does not need them when the TV is blaring and she is living now with others. I used to have a wonderful independent life with no children/pets and primarily enjoyed my career. All of this has changed. My family is useless and I have pretty much disowned them as they are selfish and care not what I am going through. For almost three years I have been totally emershed in caring for my mom. I have been with her every step of the way as she recovers from open heart surgery. I have been party of 1 sleeping at various hospitals and making sure that her medical needs were addressed. I am 61 now and so far healthy. But there is no joy in life. I have been to therapists and the last one was a joke. She sat there and really didn't seem interested. I try to deal with all of this. Add to the equation that I am dealing with some "stuff" like getting older and how depressing that is and then add to the situation living with your elderly parent and if that isn't depressing enough I don't know what is. I am tired. I have in-home help so I am much more fortunate than many and I know this. Tonight I am just sad and feel like jumping out of my skin. The in-home help leaves in 30 minutes. If I didn't have my career I would go crazy. This is awful depressing. What do I have to look forward to? Absolutely nothing. This is my life now and then most likely my mother will pass before me and then what? I will grieve and still have no joy. I never thought my life would come to this. I will not put my mother in a nursing home. She is doing pretty well and has a great mind. Her family in Pa never visit and her life is sad enough. I have always been a great daughter. But my life feels like it is no life. I have been a great daughter and have taken care of my mom emotionally and financially since I have been 19 years old. I left home for the big city but always put her needs first. Bought her a home, took her on countless vacations, treated her like a queen. I have no one here for me. I have distanced from my few friends and who wants to go out when they feel so low. Yes I have burnout but so be it. I appreciate anyone commenting as I need the emotional support. Bless you all.


musiclover, you and I sound so much alike. I think we ought to get together when we can and go out on the town. I don't know if I would know what to do anymore. After being with the hubby for 13 years and divorced for 2, I am totally clueless. So here I sit in my parents' rickety house at age 60. I feel like a total loser. (I taught biology until I took early retirement to try something different a few years ago. Who knew the something would end up being caregiving?)

I wouldn't mind the caregiving life if it was like the Golden Girls. That would be fun. Often I look around and realize that my own life is empty. I think in my case it is because I don't have any good friends here. I wish we lived in a senior community that had activities.

I don't have any answers, but I always keep the hope that life is going to be good sometime in the future. Can your mother be left alone for even a short time? or is the chance of falling too high? I was thinking that a night out every week may be just what the doctor would prescribe for you (and me).
Sweetie, maybe it's time to put your needs higher up. I know that you say she can't go live in an assisted living facility. But consider this: she will have a social life she is surely missing. You will have the assurance she is cared for and more resilience in your being to be with her when you are with her.
What leaves people feeling hopeless, often, is less the situation than the belief it cannot be changed. There are three big areas for change that I can identify: first, the rest of your family experiences a sudden, en masse personality transplant, and decide to pitch in. Unlikely. Really really unlikely. Second, your Mom experiences a health crisis which takes the decision for assisted living or nursing home care out of your hands. Who knows how likely that is; but it's not in your control. Third, you update your view of your place in the world and your family, and find a way to care for her outside your home. You can be a good daughter -- a GREAT daughter -- and still find a conning care center for your mom to live in. Especially if she is a social person, these places can be so useful. You will still have to spend time there and pay close attention. It's not shirking and it's not a free pass. But it's a recalibration of priorities in your life, to put yourself first AND care for your mom in a deliberate and resourceful way.
And until you get to the point of being able finally to put yourself, if not first, at least on the same level as your mother...know there are others out here who have similar situations, and similar feelings. You are less alone than it feels tonight. We hold you in grace and light.
You are not alone. My husband & I no longer have a life. My 88 yr old dad moved in with us after he had a stroke. Dad also has dementia. My day starts when I get up , have coffee & feed the kitties. If I'm lucky I have 30 minutes alone with my husband. Once my dad gets up, it's non stop care giving, cooking, cleaning, laundry and managing his health. Dad goes to his room about 7:30 at night. I'm so tired I'm in bed by 9. My sister doesn't think my dad should pay for respite care because he gives us a monthly compensation. I have POA & she has threatened to sue me. Of course she lives 1000s of miles away. I love my dad & he receives excellent care from us. I told my sister she can have POA & move dad in with her. No response, not even a peep from here. My husband retired in Dec 2009, we moved from another state to care for my dad. 2 mos later my husband was diagnosed with prostate cancer & had 9 weeks of daily radiation. At that time my dad was 50 miles away. Last year I was diagnosed with fibromyalgia. What happened to the golden years? I took care of my mother from the time I was 18 until she died when I was 43. She was bi-polar & disabled. I am thankful I have a wonderful husband. I too wonder if dad may be better in a home where he can interact with more people. I can't imagine how difficult this must when you are working full time. Take care. You are a wonderful daughter!!!
Musiclover, I am so sorry you are feeling so down tonight. You are not alone. Caregiver burnout is real and fairly widespread. You'll get beyond this, and there will be good times ahead.

You have been to therapists so you know that when you are feeling down and don't feel like doing anything that is precisely when you need to do something. What are you doing sitting in front of the computer while your weekend help is there? Surely you can post on this site while your mother is watching one of her shows. While you have help there GET OUT of the house. Do something you enjoy. And yes, I understand that when you are feeling down it is hard to think of what you'd enjoy. Maybe you could set up a recurring activity in the time slots you have weekend help. Join a volleyball team or a book club or sign up for cake decorating classes or anything that matches your interests and happens when you can get out. Drive out to a scenic area and sketch or photograph nature. If at all possible, do it with a buddy. Time alone can be valuable, but don't isolate yourself all the time.

I agree with the other posters that you need to put your own needs a little higher on your priority list.

Some practical small things you can improve: insist on those hearing aids, so conversation will be less stressful for you. (I go nuts when hubby doesn't have his in.) If that isn't sufficient, get wireless head phones for the tv. Listening to the tv blare all the time is stressful. Arrange for a little additional in-home help, so you can go out one or two evenings a week.

Do try to reestablish your friendships, especially since you feel estranged from your family. Everybody needs a social network. Meet friends on your lunch hour once in a while.

Don't close your mind to the possibility of long term care placement. Explore what is available in your area. Even if you don't use it now, knowing what is out there is a good idea in case Mom declines to a point that in-home care isn't feasible.

Mom may need continuing care for another ten years or so. You cannot wait that long to resume living your life. You can continue being the wonderful daughter you are and also take better care of yourself. You deserve it!

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