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HOW do you do it? I work full time, 45+ hours a week, and only have weekends off. I care for my husband. He's home all day long. I get it, he's bored. But he wants me to take him out every weekend to get out of the house, and I'm pooped. I get snappy and I don't want to show up for him that way. How do you handle it when you get impatient?

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Your husband needs to have some kind of a life of his own. In addition to homecare, he needs a companion who will take him out during the week and keep him engaged.

I don't know what your homecare situation looks like, but if you're getting him diapered, bathed, dressed, fed then you leave for your full-time job, you don't have enough help at home. There has to be more for home to remain possible.

I did homecare for 25 years. Way back when I was in my 20's I had a care client with ALS. He was great guy, but I was exhausted every day when my shift was over. Now mind, I was one of five caregivers who provided round-the-clock care. It wasn't even full-time and was my only job yet it exhausted me and I ended up leaving that job after only five months.

If there's any hope of keeping your husband at home, you have to bring in more help. If that's not possible then facility placement is the next step.

Of course you love your husband and want the best for him. Empathy without boundaries is self-destruction. He has to understand that you can't run seven a days a week because he's bored. You need help coming in or he has to be placed.
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Reply to BurntCaregiver
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Have you reached out to your state's disability division?
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Reply to cover9339
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Patty, I'm so terribly sorry to hear this burden you're carrying and the dx for your dear husband. My friends husband passed from ALS in 2007 and I know what a difficult journey it truly is.

Have you looked at ALS.org for resources and support? You need respite and you need help. Nobody can handle full time work and a husband with this many needs alone. Of course you're burned out! Was dh a vet, by chance? There are resources from the VA if so.

I sincerely hope and pray you can hire an aide to help out and give you respite. You need at least a day a week to recover and sleep late. Please keep us updated and God bless you.
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Reply to lealonnie1
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Patty, is there anyone else you can hire to take him out during the week when you are working? A male recent retiree might be ideal. Try that 'next door' site, perhaps - you might find a W who would love to get her DH out of the house!
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Reply to MargaretMcKen
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Patty, this is a heavy load to be carrying. Please get some hired help at least a few days/hours a week. It is an expense but consider it an investment in your own health and your ongoing ability to care for him. What does he do for lunch? Check into Meals on Wheels.
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Reply to MG8522
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I don't think I'd be as patient as you. Give yourself a little bit of grace, please? I'd be exhausted too,

You need some time to recharge. I agree with the other posters--can you get some help in--either to get him ready after you go to work and spend some time with him so he gets out during the week, or to take him out on the weekend so you can rest a bit?
Is there any assistance that disability can provide?
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Reply to ElizabethY
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God bless you both dealing with such a harsh diagnosis. Of course you’re exhausted! You need help, other than you, or your health will not hold up to this. No way this “gets to be routine” without big consequences to your wellbeing, and then what good will you be to hubby? Time to hire a helper! Contact the ALS support group, society, foundation, whatever it’s called, about what they have to offer. Ask hubby’s doctor, the Council on Aging, anyone who provides services in your area on ways to get help. Do not keep attempting to go this alone. Impatience will be the least of the issues without additional help soon. I’m sorry for both of you facing this and hope you’ll soon find a better plan and some peace
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Reply to Daughterof1930
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Can you get some help in the weekdays to get him out of the house a bit then? whether is a friend, neighbor or family member? that will help. Or, paid caregiver if you have to
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Reply to strugglinson
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I just joined, didn't know where to put health issues, my apologies. I was looking for tips on how to remain patient myself. My husband has ALS and degenerative neuromuscular disease that affects his breathing, bowels, and movement. He can't walk without walker, can't bathe, can't dress, can only speak in whisper. He was forced out of work into disability retirement. I'm working high pressure job 45+ hours.
I get up at 6am, get him bathed, changed, diapered, fed and settled. Then I care for our dogs, then get myself ready and head out to work. I get home and have to start all over. I get up at 3am generally to help him use the bathroom, change diaper and then back to bed.
I just want to sleep on the weekends. I take him for a day trip anywhere he wants to go every weekend.
Just looking for hope that this gets to be routine and I'll get used to it. I have great compassion for him and know he is hurting that he can't do anything himself. His mind is sharp.
Thanks for the encouragement.
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Reply to PattyMish22
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How are you burned out caring for a husband you're referring to as a "patient" when you work 45+ hours a week? When I worked full time, all I wanted to do was to go out on the weekends with my husband and have some fun!

You may want to give more details about the situation so we can understand you better and give you helpful comments.
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Reply to lealonnie1
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You have put this under burnout, Patty, but you have not added "Alzheimer's" nor filled out any profile telling us about anything at all about your husband.
You mention that you are still working 45 hours a week, and that your husband is home alone all week.

Your situation, if there is no illness keeping hubby homebound, is similar to my daughter's in that she is not retirement age and her hubby is retired now for 3 years or so. He does some part time teaching. He has taken on the shopping, cooking and most of the yard work that is maintenance. So he's a big help to her. He also has friends. He also belongs to a hiking club that goes good long distances one day a week. They have also a part time condo in another state where his mom lives, so he can be there for his mom to spend some time.
Like you, my daughter, near to retirement and with some back and hip issues, is pretty exhausted at the weekend. They share a love of concerts and they attend those occ. on weekends, but weekends are her time of rest for the most part and hubby keeps busy with his own things.

So, I am guessing here. Your hubby, I am assuming, has no limitations?
Were he deep in the throes of something I think he would not be capable of being home alone, nor of wanting a whole lot of outings on weekends.
Let me know if I am wrong.

If your husband is retired and can't find anything to do with his time it is time for him to FIND something. Whatever interested him. Fishing, painting, furniture making. Volunteer work (mine volunteered at Animal Shelter when he retired before me). Hobby. He needs a hobby. The there is gardening, cooking and cleaning and shopping so you don't HAVE to. And as to outings, perhaps compromise. You have four weekend a month. So that's 8 days. Try to do it so that 2-4 days a month you do something together. The rest of the time he waits for you to retire I guess.

If I am missing something, then let me know. If you are talking an "issue here" like dementia, that somehow didn't get mentioned, then we need lots more info from you.
Welcome to the Forum.
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Reply to AlvaDeer
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cover9339 Jan 3, 2025
I think her state's disability division may be of some help.
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You don't say what issues your husband is having, and why he's not able to get out and about by himself, so as a wife who cared for her husband for 24 1/2 years of our 26 year marriage and yes worked full-time for all but the last 4 years of his life, I would say to try putting yourself in his shoes and looking at things if only temporarily from his perspective, and that may just give you the patience and perspective that you need to continue on this journey with your husband.
I'm also a big fan about being honest with our spouses. If you're too tired to get away one weekend just tell him that you're sorry but you just can't as you have things to get done around the house.
It's normal to lose our patience every now and again, trust me all of us that were/are caregivers have done it, so don't beat yourself up over it.
Instead just apologize and remind your husband that you're doing the very best you can. And that is all any of us can do.
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Reply to funkygrandma59
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MargaretMcKen Jan 3, 2025
OP's profile is worth reading to understand her trials.
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