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I had my annual physical a few days ago. I told the doctor I mostly feel like I have an elephant on my chest. He says he hears that all the time from caregivers and I should take care of myself. He then patted my shoulder and left. Friends tell me to get someone to clean my house or do other household chores. What I want and need is a husband, so I am not the one climbing the ladder to the attic, unclogging the drain, dealing with the excavation men, etc. This seems like a vicious circle that is never-ending rounds of frustration and stress and I can't see anything easing until he gets really bad and is put in a facility. In the meantime, I am overwhelmed. A nothing situation ignites a fire because I have nothing left as a reserve of manners, kindness, reason to weather another situation. It is just me and I have no safe place to fall or shoulder to lean on. I miss his strength, his knowledge, his business acumen. I find myself envying widows. They can do what they want and when they want and our friends take care of them because their husbands are gone. My husband is gone too, but this is not who I married nor who I would chose to live with. He has Parkinson's and is in the beginning stages of dementia. Right now, he does pull it together when we are with other people so no one can really appreciate or understand what I am going through. I spend my days and nights being miserable and resentful and being eaten up by these feelings. I was recently told that people can handle being around cancer patients and have sympathy, but someone that has had a stroke or in my case Parkinson's, makes them feel uncomfortable. I see this and I understand it, especially when we are dining and watching him eat. Taking care of myself is just another thing on the list that I have to figure out how to manage. I used to be so good at organization and keeping all my ducks in a row and I am juggling and dropping the balls now and it has sunk in that I just can't do it all. Taking care of me comes last at the end of a very long and mostly demanding day.

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I know taking care of yourself sounds like a luxury in the midst of a hundred things that must be done everyday but if you're going to continue to care for your husband you have to learn how to care for yourself.

For example, I know you said you wanted your husband to be able to climb the stairs to the attic and unclog the drain but he isn't able to do those things anymore. So what do you do? You call someone to come and do it for you. We used to call it "calling the guy". Any time anything needed tending to around the house we called the guy. The sewer guy, the cable guy, the lawn guy....you get the picture. So call the guy and have the guy tend to the repairs around your house.

If you had a housecleaning service that would free up some of your time. I work in home health and almost all of my patients have house cleaning services because the families just don't want to deal with it right now. So I'm all in favor of a house cleaning service.

Does your husband take a nap during the day? When he takes a nap, lay down yourself and rest. This is self-care.

Does you husband need supervision? If so, do you have someone (a neighbor or family member) you can call to stay with him while you go to lunch with a friend?

Some people opt for in-home care. You can hire an aide from an agency to stay with your husband for a couple of hours or longer if necessary.

You can also ask your husband's Dr.'s office to refer you to a bath aide if bathing your husband is taxing on you. Medicare will cover it. And bath aids are great because they clean up after themselves and it takes hardly any time at all. Sometimes they'll trim beards and eyebrows. Bathing is a task you can delegate.

You're juggling and your beginning to drop things because you're juggling too much. Be open and willing to drop some things so you're not frantically trying to keep up.
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It sounds like you are getting to the point my step-mom was getting to after taking care of my dad 24x7. They (mostly dad) didn't want to spend extra money or have someone in the house. Finally, my step mom hit the wall and started paying someone to come in a few hours a week to sit with dad so she could go to lunch with friends, grocery shopping, bowling, etc. It was a couple of hours 2x per week and that saved her sanity. Plus, they started getting a good handy man for gutter cleaning and fixing all the little things that started piling up. My dad of course - blew his stack constantly about the money and about her leaving and about others in the house. She laid it on the line - this or the nursing home. Finally, a fall put him in the nursing home - it is 6 months later and she is still exhausted.

Get a house cleaner, get a handy man, and pay for sitters. You are likely in this for the long haul - so get your support systems in place. You matter too!!
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Two words: respite care. Honestly, it's the only way you're going to get any kind of proper rest.

My heart breaks at your description of how you miss your real husband; and of how you're in limbo, unable to begin on the new life that eventually you will have to make for yourself. This is an awful period for you, and I just wish there was a solution. A known end date. Any certainty would be helpful. But - there's nothing.

My SIL's mother cared for her husband throughout Alzheimers Disease. Every so often she placed him in a nursing home for a fortnight and got some real down time. She also had caregivers at regular times during the week; and by this time they had already downsized from their big family home to a modern, supported flat in a retirement community.

I always think of her as a model of how to do it: care for your spouse, and come through the whole experience still sane and capable of starting again.

If your own health is already suffering - and I completely sympathise with the sheer frustration of people telling you to look after yourself when quite honestly you can barely find time to go to the loo - then you don't have any option. You either look for a facility now, and get ahead of the curve; or you put yourself first in terms of financial priorities and take respite for yourself as seriously as you take medical care for your husband. It *is* just as important: you are his life support system. Without you, he's had it.
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I'm so sorry for what you are going through and feeling. My dad had Parkinson's and I really "get" what you are saying---eating with him was a desperately depressing situation, watching the strong amazing dad I once had solely disappearing into this other person...it's agonizing. He and mother moved in with my brother, as they could not afford anything else for a living situation (long backstory)...I was the only sib besides my brother who stepped in and gave mother respite time. Dad didn't like her to leave, but she had to get out. A couple of times a week and for about 4 hours. It kept her sane.
Yes, taking care of the caregiver seems so hard, but you need to. My hubby underwent a liver transplant 12 years ago. I was there at the hospital everyday, all day and he wore me out. By the time we came home, I was a mess. By the time he was well enough to go back to work, I cried for a solid day--from exhaustion. I took exactly one day off from the hospital (2 separate 3 week stays) and he'd call me at 6 am every morning whining "Why aren't you here? when are you coming up?" The ONE day I had off was b/c his brother came to town and he spelled me off for one day.
Looking back, I HAD a support network, I just didn't use them. Stupid of me--so I suffered and to this day have some real lingering anger at him/myself for NOT caring for myself.
What you are going through is hard, and it won't get easier. Make it a point to give yourself breaks--and find people to talk to about how you are feeling and what you're going through (support groups or therapy). Talking it our helped me a lot, and still does. Good luck. My heart goes out to you.
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I like the ideas above, and may I add some thoughts. If there are friends and neighbors and relatives that have said things like, 'if there is anything I can do, let me know' - say YES. If not, seek out a stay at home Mom who has children in school - so perhaps 5 hours available. (you can pay that person).
Pick a day and make arrangements for the next few weeks for that day of the week - when a neighbor/relative/friend can stay with your husband. One week get a haircut and massage. The next week do a medical appointment - dentist, eye care, doctor or whatever. The next week go to a movie or shopping trip. You would be amazed at what a relief several hours away can do for you. Make a list of things that are stressing you out - beyond your husband's condition. Get 'the guy' to do those things. In my area the college kids are already emailing the neighbors that they are available for everything from weeding to lugging heavy boxes around. Perhaps one would come in as a companion to be with your husband while you do one of your 'me days'. (You might want to have them come first to see if they are up to it). Try hard to break the cycle you are now in. We all know it isn't easy. But try it will really improve things.
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I'm with you freqflyer....I can pretty much relate to everything you said! I could add so much more to it to include how bitter I feel that I cannot seem to make time for my family, friends and my two grandsons. That in particular is making me feel very bitter because I feel robbed. I turn down invitations because there is no way I can find the time to do them at this point in time. My problems are huge at the moment as there are two parents that are in need, not just one. I really wouldn't wish my life on anyone right now....and if one more person says to me that I need to take care of me, I am sure I am going to scream! Getting help would be wonderful if I could actually depend on someone or if there were extra money around.
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Thank you so much for asking the question, and for all the answers that remind me of what to do.
Grief counseling and a 'handy man' are next on my list. I was doing ok with a well husband and a 90-yr-old aunt with dementia, but now my husband has been very sick since Christmas. Instead of him helping me, I am now doing it all. He is so weak and discouraged that I am reminded of my first husband, 18 years ago he had cancer, treatments, and sometimes "chemo-brain". I was still working, and treatment was over an hour away. He got weaker and weaker, till the infections that went septic killed him. I am typing between tears.
Next I'll make a list of what help I need, then go get it. Or maybe I'll just rake the yard out in the sun.
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My DH doesn't have anything major wrong with him - he's just old, 95 and counting.

His 3 children all live in other states and I have no children and both my sisters are getting up in years. I am 65 and have been doing the 24/7 for 2+ years now and yes, it gets tough. (I'm not complaining - just explaining.)

I too was advised to sleep when he sleeps. Well, he sleeps 12-16 hours daily now so sleeping isn't my problem. I have learned to let anything not major to slide. So the house isn't immaculate and the yard could always use trimming. I have made Ray the focus of my life and anything that can be kept for later, just doesn't make it to the short list. Neighbors offer to help but unless I cannot do something, I just thank them and keep going. When I must ask for assistance, at least people will know that I need it.

I use my computer and tablets for entertainment. I ask my sister to do any shopping for me that cannot be done online. I ask for prayers constantly of anyone who is willing to 'spare a prayer' on my behalf.

We live on a limited income (the older you are, the less you get from Social Security) - so we make do. I am blessed that my Ray can still talk to me although sometimes he has trouble explaining what is needed.

I'm going to guess that you too have experienced your DH's appetite and feeding capabilities have changed drastically. This caused me a lot of stress until I just decided, "better a fat wife than a thin widow," as I am a stress-eater.

I think what I'm trying to say is, let go of anything that can be shoved to the side. If people come to see you, they shouldn't be coming to see your house. If they're close enough to offer assistance with chores, take it one day and one instance at a time. You get to decide what is major and what can slide. Removing some of your stress is also taking time for yourself.

Personally, I enjoy the fact the TV isn't on 24/7 anymore. When Ray wants to sit outside, I sit with him, and just enjoy the quiet. Or sometimes it is a good time to change sheets, do laundry, etc. When it becomes overwhelming, I try to remember that the day is coming when I will be all alone - and I really don't wish to hurry that day.

I'm sorry this is so long.
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I'm caring for my 93 year old mother right now & understand some of what you are feeling. I don't know if you work full time like me or not, but I've realized that working has helped me to still have a piece of a normal life. It is exhausting & you have to swallow your pride & ask for help. Our tendency is to tell people we are fine when they ask & you have to be honest. When someone says "what can I do for you?" tell them. I've asked people to come visit & bring lunch. I've asked friends to stay while I go run an errand. I am in the process now of taking my Mom to an assisted care facility for one day every few weeks so I can run errands all day Saturday. It only cost $40 for the day. I don't know your financial situation, but that's cheaper than in-home care. Depending on his level of need, you might find one with a memory care unit.

I depend heavily on God & my faith to focus on one day at a time. Whenever I look too far into the future I begin to hyperventilate. I have to pull it back & just think about today. That is enough!

Best wishes & prayers for strength!
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I don't know if I can add more to what's already been said, but after reading this I feel compelled to anyway.

In taking care of my parents, one thing that's practically helped is making a list of things I need to do for them, and then making a separate list of things I need to do for myself. Writing things down for me gives me a sense of relief knowing I don't have to wonder if I'm forgetting things, or worrying about not doing things for myself. Then, I set time away, in advance, so that I can do those things for myself. And then I go about doing everything else for my parents. Even if it's as something simple as see a movie. At least this way when I start my day, I know that between 8-10pm later that night I've got that time blocked out for myself.

Whatever it is that works for you. When I worked in an office, some people would walk in and blow everybody off, no matter how "important," until they got coffee. Then they were happy to talk about anything. In principle, I think it's the same thing. Meditate, pray, eat a longer breakfast without worrying about anything, listen to some music, anything. I know it's a luxury, but I think it's one we have to take.

Also, find someone you can talk to who's not involved in the situation but sympathetic to you. With dementia and Parkinson's, it's easy to wonder if you're the crazy one. You need an external person to remind you that you're not.
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