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When a stressed out, burned out caregiver asks a question here, 9 times out of 10 we tell them to make sure they take care of themselves, and part of that advice is getting out and doing things they enjoy.


However, I’m wondering if that’s easier said than done. At the age of 65, through necessity, I’ve had to go back to work. I’m lucky to be doing what I really enjoy, working with young children, but I’m gone 5 days a week, almost all afternoon. Our mornings are a little crazy, and of course hubby still has to be changed and fed.


Part of why I've done this is for myself. I need to get out. I can’t go to a store because we have no money. Sitting in a coffee shop or park takes up all of an hour. Volunteering—well, that’s a great idea but if I’m going to put myself out there, I’m going to get paid for it.


And, the worst part is I still need to take care of my husband. He still has the same obsessions and demands. He’s there when I leave and there when I get home. And it starts all over again. Plus, now I’m tired from my job and just want peace and quiet, not bed/diaper changes, meals, bowel movements, fetching and carrying, etc. Is there a happy medium?

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Ahmijoy, I heard this the other day: "only the wearer knows where his own shoe pinches." And I think that only the individual knows what "taking care of herself" really looks like.

So, what would really *help*? A morning personal care assistant, so that you can shower and dress and eat breakfast in comparative peace? Time away from home for the occasional weekend's respite?

You make a good point that we're happy to tell everyone to take care of themselves and then think it doesn't apply to us! :) But in your case, as well, you are now a breadwinner. Save some of that just for you! Hugs.
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Ahmijoy Oct 2018
Thanks, C. Yes, 90% of the reason I searched for a job is to help pay bills so we can keep our home and I can keep my dog. I was so weary from financial worries constantly and there is no help out there for us besides $15.00 a month food stamps. The money hopefully will allow me to get a pedicure, maybe a hairstyle after a year with none, and even new windowshades that don’t have kitty chew marks on them...!

Id have to be here when the PCA came because the aforementioned dog won’t let anyone in the house, but that’s a great idea. They can help get my husband up into his wheelchair. I could get him back in bed before I leave. Great idea. Thanks!

Value your friendship! Hugs back at you!
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((hugs)) Ahmijoy. Your post brought back memories of my time in the trenches when I was caring for mom at home; that knowledge that no matter how long or often I got away the burden was always waiting and there was no escaping it. I never really recognized how omnipresent it was until mom went into the nursing home and the weight was lifted.
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Ahmijoy Oct 2018
Absolutely. Respite is great. I had 4 1/2 months last year. I missed my husband while he was in rehab, but wow. The house got cleaned, laundry got done, stress level was almost nonexistent. He came home bedridden and incontinent both ways. The responsibilities I had to him before are doubled. But, I keep telling myself it’s better than the alternative of not having him around at all.

Thank you for your understanding. I appreciate it!
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It is so easy for people to suggest but not so easy to follow the suggestion. I am so sorry you r in this position. I just can't imagine. And you have been doing this for years. I have told my husband I will keep him home as long as I can if he ever needs care. No, I didn't promise him. But just walking thru a Nursing Facility really gets to him. (Think it has to do with a hospital stay as a kid and having a hearing problem). You just don't know what life will bring.

I can imagine at 65 how tired you are. I was watching a toddler at that age and right into caring for Mom. Hopefully it will all fall into place.
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Ahmijoy Oct 2018
Thanks, JoAnn. Today was overwhelming at my new job and I feel every one of my 65 years. It’s a daycare center and I feel like there were 700 kids in my room, more than a few with behavioral issues. But, if I can pay at least some of our bills, it will be worth it. We cannot go on like this,with lapsed insurance and endless collection calls.

I know if I had to put my hubby in a facility, he would be dead within a year. He would be so miserable and feel so useless. You’re right. You just don’t know.

Thank you for your kind words and understanding.
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Ahmijoy, wow! You are a true hero, like special forces league.

Toddlers are so busy but I bet once you get in your groove you will be getting some of their energy and feel so much better.

I know money is an issue but are there any community organizations that offer companion volunteers? I did that and almost always fed a meal and cleaned up. Even if you only got 1 day a week I bet you would benefit from it.

Enjoy your pampering and your kidlets.

Hugs to you, you incredibly strong woman. Your husband is very blessed to have you and the love you share.
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Ahmijoy Oct 2018
Thank you for such kind words. I don’t think of myself as strong; just scared. The vision of having to leave my much loved dog behind at a shelter and the look that would be on her face as I walked out, I’d drive straight off a bridge on my way home.

Ive thought of community volunteers. But hubby, while not antisocial, is not the sort who would enjoy sitting and talking with a stranger. In the “good old days” when we would go to a bar to watch a football game, I was the one who would engage the people around me while he just sat and watched the tv.

At least in the end, when I’m standing at the Pearly Gates and St. Peter asks me “What did you Do?”, I can honestly answer, “I tried.”
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Hi Ahmijoy,

I’ll admit that as I got ready to start typing an answer I paused because I felt I really had nothing to say, no advice that could mean a true solution for you.

Same me as I don’t find any answer for my own situation, yet when I look at my life and then read about yours I recognize I have a lighter burden. My burden or my suffering comes mainly from the emotional and mental daily abuse that my mom unknowingly creates (yes, I recognize she does not realize what she is doing. She has never understood what she is really causing; very intelligent woman but not fully conscious emotionally) and also from seeing her suffering so, so much because of her illnesses and her depression.

But I don’t have the burden of having to change diapers, change bedding, bathe, feed, etc., as of today my mom is able to do all that. And I pray, from my heart, she continues being able to, not so much for me, but for her. Her greatest struggle is to accept her decay, if she lost her ability to be independent when it comes to her basic needs, I don’t know how she (and I) could survive because her depression and anxiety would simply kill both, I’m afraid.

So, dear Ahmijoy, you are facing it all, including monetary limitations, yet, you put your husband’s wellbeing first. You don’t consider outside care a solution because you know if you placed him there he’d decline quickly. So, all I can do for you as the believer I am, is tell you that I’ll pray for you so God who is right here with us, walking side by side with us this path of suffering we have taken, continuous giving you strength, patience, endurance and HOPE!

And the only practical advice that I can give you is to learn to truly live the moment, one step at a time, one situation at a time.
At this moment you are talking to a toddler and he or she makes you laugh? Live the moment, let that laugh feed your soul.
You’re changing your husband? This moment will pass, and while very hard to endure, you’re allowing your husband to feel safe and have some dignity as he could not feel the same with an stranger.
You are driving from work to home? Play some nice music and sing along. I know, I KNOW it is hard not to live like a prisoner of anxiety, feeling that you’re about to go back to “jail”, but that is the point, discipline yourself to live that moment, not the next, not the past.

That is is the only thing I can share that I know helps me keep going, when I’m able to do it. It is hard. And the overall light that helps me keep going too is knowing that I am doing what is right. You too are doing what is right, let yourself find peace in knowing you chose the difficult path which is the right path over the easy path.

May God bless you and embrace you with His immense love and peace!!
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Ahmijoy Oct 2018
Rosses, for someone who says they had “nothing to say”...wow! I know God is with me, He has to be or I’d have gone over the edge long ago. And, you are so right. Living in the moment is the only way. This is why I so enjoy working with young children, because THEY live in the moment. And they do make me laugh!

My son and I are great fans of the Dave Matthews Band. “DMB” has kept me sane for a long time. So...good advice!

Thank you so much for your kind words. I will truly carry them with me.
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Ahmijoy, have you considered Medicaid? It won't improve your husband's help, but it would relieve some of the financial stress. Medicaid provides in-home care, as well as care in a facility (if that time comes.)
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Ahmijoy Oct 2018
Thanks, Jeanne. Yes, we have repeatedly applied for Medicaid in many of its forms and many of its programs and have been denied for every one. We make “too much” to qualify for help, but not enough to pay our bills. We even explored the Miller Trust Option which would have required us to deposit 10% of his Social Security in an account. I was very confused about this and what it would pay for and not, and finally decided it was just easier to keep things status quo. We had a person from a state program come out and interview us for an hour. And, we never heard from them again. I’m not too proud to ask for help, but after hours and days of research, there’s just nothing out there for us.

Bit thank you for your suggestion. I wish it would work for us.
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Ahmijoy, I have to share my experience with a man I companion sat with until he passed away.

His wife warned me that he would just be there, watching his programs and worrying about when she would get home. Okay.

So for the 1st 4 visits that was what we did, mostly, I would comment on the game shows, really just acknowledging him, ask if I could get him anything or do anything for him, then when he started feeling more comfortable with my presence I started asking him about himself, this helped me know where he lived so I could try to engage him in something. He liked games, so I was willing to be taught.

The 1st time his wife walked in and he said "You're home already?" Was the last time she ever worried or hurried. She could not believe it, he was so opposed to outside help that she only asked when she was up against a wall.

He looked forward to our days together so he could cheat me at games, I still laugh at his "innocence " when I would call him for changing the rules to suit him and so he could win. We became friends and I miss him yet.

So please do not decide that he will not be tolerant of another person ever, it could change. Especially if he gets lonely while u r gone, may give him something to look forward to. Just something to consider. The dog will also get used to the person and be more social as well.

I pray that The Lord sends you an angel to help you with your husband.
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Rosses003 Oct 2018
Thank you Isthisreal, that might apply to me too. I just hope that we also receive an angel that can potentially help brighten up my mom’s life and lighten up mine.
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I was not able to find a job in the town of 8,000 that we lived in and I would have had to travel 1+ hour to the large city for a job.  Although Mom could perform her own ADLs, she was very emotionally dependent on me and had trouble letting me leave the house to attend meetings or activities.

I recently found this website:  https://www.payingforseniorcare.com

It has a lot of information about different ways to pay for care at home or in a facility.  Just "Copy and Paste the URL to your internet browser.  Good Luck.   

https://www.payingforseniorcare.com/longtermcare/resources/locator_tool.html

"Eldercare Financial Assistance Locator:  Over 400 programs provide financial assistance for elder care. Help comes from federal, state, and local governments, the VA, non-profits, private organizations, and as many as 50 other agencies. The large number of sources and different and often conflicting qualification rules makes determining one's eligibility a challenge. 
 By answering a few questions, we help you find the programs for which you or your loved one is currently eligible as well as those programs for which you might become eligible as your situation changes."

 Hope that this website is helpful.  {{{HUGS}}}
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Ahmijoy Oct 2018
Thank you so much for sharing your experience and advice, Dee. Hubby is very “stoic” about my leaving, but I know he would rather I was home and I certainly would as well. Financially, it’s just not possible.

If if I signed up for any home care help at all, it would have to be in the morning before I leave. We have a large 84 lb) dog. She would not let anyone, especially a man, into the house. Even my son refuses to come into our home. She’s not a vicious attack dog, she’s just antisocial and I don’t trust her. But, at some point in the future, it will become necessary if we continue to not qualify for Medicaid and because of that he wouldn’t be able to go to a facility. You’re right, though, home care help would be ideal.
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Ah, I get the dog is potentially aggressive but with socializing with the aid, she will learn that this person is allowed and not a threat.

You would need to find someone that loves animals and is willing to take the time to get to know the dog.

I believe that animals can feel spirits, so I personally pay attention when my dog is not keen on someone. She sees something I don't, in the past when I've blown it off, I lived to regret that I didn't pay attention.

Dogs are like people that don't get socialized, they don't know how to be social and understandably in your situation the dog knows you and hubby, only.

I guess I am always hopeful with animals, they feed off us. So if I'm stressed and fearful, so is my dog. I only worry she'll hurt someone when they make me terribly uncomfortable.

I too, would never give up my dog for any reason.

Sorry if I offended you, I was just giving you my view point and hoping to be helpful.
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Ahmijoy Oct 2018
Is, why is that offensive? We are on the same page. My dog is my heart. She’s not a certified “comfort dog”, but she is MY comfort. Her head on my legs at night...her looking out the window to make sure there’s no one in our yard...I know.. that sounds weird for non-dog people. I’m glad you understand. Thank you.
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Can you get daycare or get him in somewhere for at least respite. In UK carers are meant to get respite 2 Weeks every 12 but have to pay for it. Personally I took a break of a week after 6 years of caring responsibilities not full time though.
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Ahmijoy Oct 2018
I’m not sure. Will have to figure thus out. Thanks
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Hmmm, it is hard to take care of ourselves when money is an issue. I’m assuming that you have a caretaker for your hubby while you are at work? If at all possible try to just have moments when you are at home and a caretaker is with hubby and just disappear to another area in your home, be it a soak in the bathtub or the door closed in another room where you can read or do something you enjoy with instructions that you are “not home” just some quiet time for yourself, this is what I will do one day a week during the four hours the caretaker is here.
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Ahmijoy Oct 2018
My “downtime” is with my grandsons. My reason for living. 😁
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I am sorry, but I don't have a good answer for you. I am still doing it although I do get help but being a caregiver and working is like working two jobs and is exhausting. Good luck to you.
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Ahmijoy Oct 2018
Thank you. Prayers.
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Ahmijoy: To make your finances change somewhat, think about things you own that you could sell (as they're no longer needed). That's one idea.
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Ahmijoy Oct 2018
Thank you Llamalover. Yes, I belong to quite a few sale sites, mostly on Facebook and I have sold a lot of stuff. It’s gas money. Sad,y, I had to sell my mother’s wedding rings and her sterling silver flatware. I did check with my kids first to see if they wanted it. They did not. The only thing about that is it’s not a constant source of income, but our bills come every month. I still try to sell things now. It is good for getting rid of clutter! 😊
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