Caregiver: Working full-time and caring for Mother full-time.

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For the past 7 years I have been taking care of my mother with Alzheimer's along with the assistance of a homeaide while I'm at work. I'm exhausted at work and at home. I am feeling very STRESSED, ANGRY AND RESENTFUL. I have two siblings that live in another state and have kept their distance. Both of these siblings are not speaking with each other so it causes more tension and their excuses are they are busy taking care of their own kids. I'm sick of their BS. I have absolutely NO PATIENCE. I'm getting sick, my left arm and fingers are stressed and painful. I'm really angry that I am now seeking to put her in a memory care unit, which is expensive, and this angers me profusely. I just can't do this anymore. If I get sick, what will happen to her? I have no life. I'm single, no children and no SUPPORT. I'm anxious and want this to be over. I'm p!ssed off! I never thought my family would react this way. God does not like UGLY.

9 Comments

Ginger, I'm sorry that you're so stressed. You really do sound close to burnout!

I'm glad to hear that you have help with your mom during your working hours. Can those hours be extended to give you some respite time when you're not working?

What are mom's needs, and what are her resources? Something to look into is getting a professional needs assessment through your local Area Agency on Aging. You can find them on your county or municipality website.

Once her level of needed caregiving is determined, you get help with an analysis of her resources. Does she have SS, pension, savings? Remember, mom's care should be paid for with mom's resources.

What help would you like from siblings? Respite? Financial?
We just had an assessment though the AAA and within an hour we had been approved for a grant to pay for some respite care. I broke down crying on the phone when the lady called me. It is funded through a non-profit respite agency in Nashville that I didn't even know existed.
We have four kids, I work fulltime, my husband is self-employed, and have siblings who decline to help a whole lot, if at all. My parent lives with us. I am so excited to be able to do things with my family again, even if it is just for brief periods.
Hi Ginger,

I could have written your post.. except I have 2 parents with dementia. I also have a full time job and not 2 but 3 siblings who do nothing..and am looking for a memory care for them as well.

So sorry you are going through this..if it helps at all you are not alone. Its hard to believe siblings and other relatives turn their back on you when you need them most. If only they knew the horrible stress mixed with lack of freedom, exhaustion, hopelessness,fear. .. would they have any empathy at all??

I'm going to a therapist at the moment to deal with all my anger issues that have arisen with caregiving. My strategy right now is to take it one day at a time, one problem at a time. Also trying to not focus on the anger, disappointment, jealousy.. these emotions take so much energy.. which we need to focus on other things.

My therapist seems shocked when I tell her about my siblings and other relatives who look the other way.. won't even give me emotional support, won't even return my calls or texts.. they just do not want my parent's problems to interfere with their lives one iota. I hate to see others going through the same thing because i know how painful it is..but I do know it is a common issue here on the ageing care forum.

Most important is take care of yourself.. don't disappear in all this. Put yourself first even if no one else is at the moment.

((hugs))
I am trying my best but losing this battle alone. My mother has a pension along with SS (that my father left for her when he passed away 13 years ago. I was also my father's caregiver. He passed away from cancer. I was very close to my father and until this day grieve for him. The money is used for rent, bills, food, homeaide services (which is expensive), medications, other amenities and doesn't leave her much for the end of the month that I have to tap into my own money for assistance. I really thought my sibling would take over once my mother became ill with this wicked illness. Today I am planning to go to the doctor. I am very stressed and my left arm and fingers are feeling weak. I think it's the years of anger and the emotional turmoil I've been feeling. I've argued with my siblings over this and am deciding to cut them off completely. I find it amusing that both these sibiling that live in the same state decide not to talk to one another (I feel it's to avoid discussing what's going on with my mother's care). They think that by not calling or staying silent and not talking about this situation will just go away. I am deeply saddened and angered. I hope
the Universe finds a way to help me cause I'm crashing and I need to make some moves this year with my mother's care and put her in an affordable facility. Which I know will break my heart and this is what I wanted to avoid. Thanks so much for your replies.
Have you thought of putting her on hospice? Is this something you can discuss with her doctor? Are you ready emotionally to discuss with her doctor? It wouldn't hurt to inquire options. I'm not advocating ending your mother's life because you're frustrated from the lack of support. I think you should consider her future - about her quality of life as she's progressing in her disease process. My mother could easily live another ten years based her last set of labs/blood work - however - she's been home-bound since 2013 due to a ridiculously slow decline from the complications of vascular dementia. It's truly awful to see her knowing she's in a very slow decline. She is aware of her miserable state but doesn't have the verbal skills to express this due to progressive motor decline and now screams like a toddler whenever she wants something. Seriously. She just screams like a ragingly p!ssed-off toddler from H*ll and I have to go through the checklist to figure out why she's screaming. A major area of the brain that controls her speech and motor skills was affected by the stroke. I love her so much but a few months ago I made the decision enough's enough - for her - so the next time she's get a fever, I'm putting her on hospice and letting nature take it's course, i.e. she'll pass away within a few weeks. I have a DNR in place. Death With Dignity isn't available in our State and I don't have the financial resources to uproot her one that does have this law. Her future? Cancer, kidney stones, gall stones, pneumonia...there's only so much suffering one should have to live with. I just can't bear to see her aware of her suffering from this or that. It's not fair to her to have her body and mind be battered and bruised from this or that illness in the last years, months, days of her life. I'll be devastated when she's gone, but I'll be also be very relieved that she's not suffering anymore.
I spoke to the doctor and apparently she's not in the hospice stage. The doctor both PCP and Neurologist recommended a memory care facility and stated that there was nothing else I can do for her and that since I'm still young not to give up my life to care for her because this disease can linger another 15 to 20 years (my mother is 74 years old). I can't bear another 15 or 20 years of this. I feel bad to say this but it's best for these patients to just pass away. To see them suffer and not live a quality of life just annoys me greatly. They system sucks to provide the proper support especially for single caregivers who work and try to juggle caring for someone at the same time. I can't wait to feel relief and God knows how much I've done for her. I, like yourself, will be devastated when she's gone. She's been depressed and shut down since her husband (my father died) and watching her, living with her, with this disease and depression has taken a toll on my own health.
Ginger,
Do you have any relatives ( cousins, nephews, nieces, etc.) or know of anyone in your town or church who would appreciate a rent-4-help situation? Consider anyone who's not an addict or molester.
I ended up with a younger relative who helps me with mom (Parkinson's)and keeping an ear out for my mom at night. This particular relative was having difficulty finding employment and going through a bad breakup..I provide a place to stay, some money on a weekly basis, NONE of my typical "you should," or "why didn't you" or any unsolicited advice ( very, very, difficult for me at first). It's working out ok--- I have a little more breathing room, I've gotten a friend and mom has an additional person to hang out with.
We had to work out our respective do not disturb times; and I shut down the family gossip about this particular relative with "...X is here, with me, doing what y'all should be doing"
You're spot on Ginger. It's a difficult decision and there's no right or wrong answer. You just need to be okay and be at peace with whatever decision you make and don't let anyone else influence you. You may feel guilty or relief or sadness or anger or indifferent...and this is okay. You have time to decide so don't rush. In fact, if you can get a part-time caregiver to come in one weekend in the next few weeks, then maybe you can get away, stay at a nearby hotel, so you have some time to yourself to rest, first, then think how you want to approach finding the right place for your mother. Do some research online. Make a game plan. Maybe just taking a weekend to yourself will give you a breather and if you can afford it financially, maybe getting someone to come in every other weekend so you can get away and have time to yourself instead of putting your mother in a memory unit. You shouldn't feel bad about wanting these patients passing away. I feel the exact same way and I've firmly vocalized Death With Dignity should be a national law. It's heart-wrenching to see your family member suffer - because you can't reverse the disease process and it's just going to get worse. I cry every night. My mother is 75. I'm an only child. My parents immigrated from overseas so although I have plenty of extended relatives, I had no immediate family to help as I cared for both parents single handedly when they needed me. I don't regret it one bit. I've grown so much from this experience and I'm a much better person for it. I have to believe things happen for a reason and taking care of both parents dramatically changed the trajectory of my life - for the better. I'll be a better spouse/partner, a better businesswoman, a better friend because of all the lessons I've learned from being with my parents at the worst time of their lives. It's not like I'm jumping up for joy waiting for the moment that Mom will develop a fever so I can put her on hospice, it's more of I'm at peace with this decision and oddly since making this decision I'm actually enjoying my mother (though it's still very stressful) so much more rather than worrying about how much she'll suffer from this or that medical condition in the future. My grieving for her started the day I took care of her full-time. I'm way past the funeral part now. When she actually does pass away, there will be no formal funeral as I'm taking a serious vacation. I've been racking up those Marriott Reward Points for a reason! Good luck to you!
I think that it's perfectly normal to be overwhelmed when you are working practically, 24 hours a day. (All day at your job and then the rest of the day and night with your mom at home.) I would think that you are likely sleep deprived too. That can make a person very anxious and exhausted. I'd try to locate somewhere to get me RESPITE care immediately, so you can get some sleep, relax and recharge your batters for at least a week. Then, explore your options.

If the doctors have told you that mother needs Memory Care, then, that's what I would explore. That is not a terrible thing, but, a great thing, since there are 3 shifts of people there to provide your mom constant care and attention. She'll still need you, but, when you arrive you will be rested and more able to provide her with attention and your full focus.

You might consult with an Elder Law attorney. I'd keep in mind that in most states, the adult child is not required to pay the expenses of the parent. I'd explore costs and what she can afford and what she may be entitled to, even if she can't afford it, based on her own income.

Not all people can handle issues like dementia. It's sad that you haven't had support from your siblings, but, not everyone can do that. Also, do you know if they agree with your decision to keep your mom at home and be her caregiver while working? I wonder if they don't think it's a good idea. Have they mentioned it? I'd try to work on getting out from under the stress that you know is hurting you. Sounds like a win win to me.

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