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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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Yes, I had AC people here and irrigation people here yesterday but day-to-day I need someone to help. Big stuff, of course, I will have a workman. I miss/need someone that can drive to the post office or go get milk or answer the phone or as we struggle with now, turn the TV off and on. I am his constant.
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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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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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dsprt51, I know how you feel about taking time for yourself. Like, when???

When I was helping out my very elderly parents for about seven years, they still lived in their own house, refused to downsize, refused caregivers, refused cleaning crews, they lived by themselves. I was doing just the logistical stuff as I was a senior myself so cleaning two houses wasn't going to happen. Thus a lot of stress.

I would faithfully make doctor appointments for myself, but wound up canceling them due to something going on with my parents.... [sigh], so I just gave up for three years of seeing my specialist. It was to a point if I saw another doctor's waiting room I was going to scream !!!

Me time wasn't there. I was too stressed out to even want to go to a movie [had the fear cellphone would ring saying Dad had fallen], same with dining out. Lack of sleep didn't make me a happy camper.

I remember a couple years ago when I fell and broke my shoulder. I had to stay in bed for 2 weeks. During that time my Dad had called me to see if I could take him for a haircut :P Good grief.
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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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dsprt, there's good advice here - hope you'll take it up and accept any support being offered you, and hire people for more chores. I think the doc you mention was only at the edge of what he helps with (they all have pretty specific edges, I find!). It also sounds like a good time for some grief counseling - he's here, but you're still suffering a loss. Bless you, this must be so difficult. Give yourself permission to make it less so.
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dsprt51 I am one of those widows whom you envy and I used to envy. Thanks for your candor. My husband had Parkinson's. I will write more later today. Hang in there!
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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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Again, many good comments above. I say "take care of yourself" all the time because as a caregiver we need to do it and we need to hear it repeatedly so we will do it. Sometimes we have to get so mad at hearing the words before we will actually listen to the words. Like someone stated above, it doesn't have to be much.
Yes, doctor's appointments, mammograms, routine stuff - make the appointment - so you reschedule it a half a dozen times-keep rescheduling until you do it. (I have become the queen of rescheduling appointments, as I'm sure so many others on this forum have as well).
You have to take the time to make this time happen for yourself. Bring in volunteers, family, or paid aides to give you time to yourself. It's okay to do that. My mom fought it for well over a year or so, but she has resigned herself to it and the digression of dementia has helped with that as well.
Do not feel guilty taking time for yourself. Do not allow others, including the person you are taking care of, to make you feel guilty. Sometimes you might have to ease into taking time for yourself, whatever works for you.
You will be a much better caregiver if you take care of yourself and give yourself the downtime you need. Also, life after caregiving will be much better because you will have taken care of your mind, body, and spirit.
Taking care of yourself could mean any number of things outside of taking care of your health through healthy eating, exercise and routine doctor's appointments. Taking 15 to 30 minutes to do: reading, walking, gardening, talk with a friend, nap, meditation, stretching or yoga, sip a hot cup of tea and stare off into space, watch your favorite television show.
It doesn't have to be much, just something every day or however often you feel you need the break.
Also, if the night time becomes a real problem and you are not able to get enough sleep, bring somebody in to sit for the night so you can sleep. Proper sleep is most critical to your well-being. I was finally able to bring in help at night 5 days a week. What a blessing and what a difference it has made for me. It took me several weeks to be able to sleep knowing someone else was in my house taking care of mom. But, it was a necessary thing I needed to do for myself. I'm far better off with more sleep and so is my mom.
You can figure it out and make it happen. You will be so glad you did.
If something were to happen to you, what would happen to him?
So remember, take care of yourself first so you can take care of him.
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I could have written this myself. You and I are very much on the same emotional roller coaster. My husband, too, has early dementia along with myasthenia gravis. I have moved us back to our hometown with the hopes of having a better support system but that was only for the early days here. It has now been a year and his son who lives in town has bothered to call him or see him maybe 4 times excluding the time his father went into myasthenia crisis and was hospitalized, then he was in my face daily and threatening a guardianship battle. I have family here but they have their own lives and like your husband, mine can do short term normalcy when around others. He can even fool the doctors to some extent. So, to your question as to how we are supposed to take care of ourselves.........I have tried hiring someone in to stay with him for a few hours a week which he resists as he claims to not need a "sitter" and her schedule doesn't always work with mine. I do have support of my brother and brother in law for getting things done around the house but I hate to ask and usually do it all myself. So, I think what you and I need to do is ASK for help, which is not something I am comfortable doing and you probably are not either. Whenever people tell you they are only a phone call away or to let them know if you need anything, we need to speak up and say exactly what we need. Sorry, that is the best I can offer for now. Good luck to us both and I, too, will be following your question to see if anyone has anything to offer.
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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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There is one way you can start taking care of yourself that doesn't involve time or money. That is to think of yourself uncritically, accepting that at times you may feel discouraged or angry. It also helps to talk to yourself and your friends about things you are grateful for.
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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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Reading the above is heartbreaking. Sometimes we must do what we don't want to do. However, YOU have to learn how to take care of YOU. If this means putting the person into a facility so you can live a normal life and not be destroyed, you may have to do that. And you won't need to constantly 24/7 see the old person vs. the now person. This is YOUR time of life. Use it wisely.
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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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I feel for you.. I hear the same thing, You have to take care of yourself. Easier said than done at times.. Husband has Parkinson's and has dementia as well  as other health conditions.. He does not want anyone here, NO way NO how.. I have tried hiring help, they didn't last long. There are no neighbors that even want to help with him. He has threatened everyone in our small town. We are on a list for family respite care. Lord only knows how long we will be on the list. I contacted our Agency on Aging, what a joke, I was told that there is nothing that can be done unless he is bedridden or almost dead, their exact words. When he turns 65 we maybe able to get him on a program called choices in our state but not until then.. I get so stressed out that I feel like I am coming apart at the seams.. The saturday before Easter I left because he threatened to kill me..when I came home Sunday he was totally calm and had forgotten what he had said or acted like..
To get some time to myself I take the cell phone, turn up the volume on the answering machine, I lock my husband in so I can go do the grocery shopping or bill paying. I call him when I pull in the driveway so he knows its me and I am coming into the house..
Yes climbing the ladders, doing the plumbing, doing the maintence on the car and the riding lawnmower is not my idea either to go along with the household chores.
If he would agree I would move us to an apartment.. cut back on my stress.. so that we can try and enjoy what time we have together. The dementia has already progressed . I have asked his physchatrist to up his meds she says No its the dementia , we have an appt with the neurologist in a couple of weeks and hopefully he will change his meds..
Take the time when you can.
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DEAR dsprt51
I HEAR YOU AND LOVE YOUR DESPERT51 NAME! I AM ALSO A CARETAKER OF A VERY OLD AND LONG TIME FRIEND - I AM 79 AND HE IS 82. WE RODE THE SAME SCHOOL BUS TOGETHER BACK IN THE 1950'S. WE BECAME FRIENDS BECAUSE OF OUR LIFE CIRCUMSTANCES. HOWEVER, WE BECAME REALLY GOOD FRIENDS AND UNDERSTAND EACH OTHER. HE NEVER MARRIED - I DID. AFTER I WAS DIVORCED, IN MY 50'S, I RAN INTO HIM (THAT WAS ABOUT 20+ YEARS AGO). WE AGAIN BECAME FRIENDS WHO UNDERSTOOD EACH OTHER AND TRUSTED EACH OTHER. I HAD A CAREER - A FAMILY WHILE HE TOOK CARE OF HIS BLIND DIABETIC MOTHER, AND NEVER MARRIED.
SO OUR RELATIONSHIP IS BASED ON TRUST, UNDERSTANDING AND A GENUINE LIKING OF EACH OTHER. WE ARE BOTH VERY INDEPENDENT. WHEN HE BECAME UNABLE TO LIVE BY HIMSELF HE MOVED IN WITH ME. OF COURSE, HE PAYS HIS SHARE AND MORE OF THE EXPENSES OF THAT. HE IS SUFFERING WITH LUNG CANCER AND MILD DEMENTIA AND IS VERY WEAK.
SO HOW DO I MANAGE ON A DAY TO DAY BASIS? I MANAGE THE WAY I HAVE ALWAYS MANAGED IN MY LIFE. I AM AN ORGANIZER SO THE MANAGMENT IS UP TO ME. OF COURSE, HE PAYS ALL THE EXPENSES RELATED TO THAT. HAS IT DISRUPTED MY LIFE -- YES! HOWEVER IF HE WAS IN A FACILITY TO TAKE CARE OF HIM - I WOULD STILL BE THERE DAILY AND OVERSEEING HIS NEEDS. HE NEEDS THAT HELP NOW. HE WOULD DO THE SAME FOR ME.
I HAVE TO ADMIT IT IS OVERWHELMING A LOT OF THE TIME - BUT WITH A BELIEF THAT I AM DOING THE RIGHT THING FOR ME - IT WORKS. ONE THING THAT HAS HELPED IS THAT I HAD TO ACCEPT OUTSIDE HELP. HE AGREES WITH THAT AND PAYS FOR IT.
NOW THAT BRINGS UP ANOTHER PRESSURE - FINDING THE RIGHT HELP. BECAUSE OF MY WORK BACKGROUND I AM ABLE TO DO THAT. WE HAVE A PERSON WHO COMES IN AND CLEANS - WE HAVE A DRIVER TO TAKE BOTH OF US TO OUR MEDICAL APPOINTMENTS AND SHE HAS THE KNOWLEDGE TO UNDERSTAND OUR MEDICATIONS - MAKES SURE WE HAVE A CURRENT LIST - AND FILLS OUR PILL BOXES WEEKLY. SHE ALSO TAKES US TO OUR DOCTOR APPOINTMENTS BECAUSE OF HER MEDICAL KNOWLEDGE AND EYESIGHT PROBLEM WITH DRIVING - AND - SHE TAKES NOTES! SO, TO KEEP ME FROM BEING OVERWHELMED WE HAVE HIRED SOMEONE WITH THE ABILITY TO DO THAT.
I HAVE NOT GIVEN UP MY SOCIAL LIFE BECAUSE WE HAVE SOMEONE TO TAKE CARE OF HIM WHEN I CANNOT BE THERE. OF COURSE, HE ALSO PAYS FOR THAT. I CANNOT SAY THIS HAS BEEN EASY FOR SURE! HOWEVER, I AM DOING WHAT I THINK IS RIGHT - HE IS PAYING FOR THIS TO BE POSSIBLE - WE STILL ARE BEST FRIENDS. THERE IS NO NEED TO GIVE UP THINGS THAT ARE ENJOYABLE FOR YOU - THE NEED IS TO FIND SOMEONE TO ATTEND TO THE EXTRA THINGS THAT NEED TO BE ATTENDED TO NOW. NOW, I KNOW THAT IS NOT AN EASY THING TO FIND. I WENT THRU QUITE A FEW AGENCYS ETC.ETC BEFORE I JUST ADVERTISED FOR WHAT I NEEDED. I INTERVIEWED PERHAPS A DOZEN PEOPLE - TRIED A FEW OUT - AND THANK GOD! I FOUND THE RIGHT PERSON.
I FIND THAT AT MY AGE IT IS NOT UNUSUAL FOR A WOMAN TO GO ALONE TO EVENTS - ESPECIALLY IF THE REASON IS KNOWN. PERSONALLY, I THINK THERE ARE MORE WIDOWS' THAN WIVES - AT LEAST IN MY CIRCLE.
SO, WHAT I AM TRYING TO SAY TO YOU IS THAT YOU CAN STILL LIVE YOUR LIFE - FOLLOW YOUR INTERESTS - AND FOR SURE TAKE SOME TIME OFF FROM CAREGIVING. GOD KNOWS WE NEED IT!
NOW, I SHALL SHARE WITH YOU THAT MANY OF MY FRIENDS THINK I SHOULD JUST PUT HIM IN A HOME. WELL I GUESS THAT TELLS ME WHAT KIND OF A FRIEND THEY REALLY ARE. PERHAPS THE KEY TO IT IS THAT HE PAYS FOR THE EXTRA HELP HE NEEDS AND SUPPORTS ME REMAINING ACTIVE IN MY LIFE AS I HAVE ALWAYS BEEN. LIFE GIVES US MANY CHOICES. HOW TO HANDLE OLD AGE IS ONE OF THEM. ALL I CAN SAY TO YOU NOW - MY CHOICE HAS BEEN SO FAR SO GOOD BECAUSE WE NEVER KNOW WHAT TOMORROW WILL BRING.
I WROTE TO TRY TO TELL YOU HOW I HAVE MANAGED. THAT MAY NOT BE THE WAY YOU WOULD BE COMFORTABLE. SO THEN THE ANSWER IS - HOW WOULD YOU BE COMFORTABLE? YOU CAN'T CHANGE WHAT HAS HAPPENED BUT YOU ARE IN CONTROL OF HOW YOU CHOOSE TO LIVE WITH IT.
I WILL BE THINKING ABOUT YOU AND WISHING THE BEST FOR YOU.

ROSE PETAL
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Do you have equity in your home? If so, it might be time for a move. I hesitantly moved from a beautiful home built in the 60s to a new one story that I adapted to his needs. Less upkeep. And I held back some of the equity to help pay for caregiving assistance. Your husband is in the beginning stages of dementia? It could get much worse. The time to move him is now, not later. Look for a place where you will be near help. I looked at assisted living, over 55 communities, and ultimately settled on a new home in a new subdivision, near my son who could help out with handyman tasks, although I do still hire occasional handymen to help out atriums the house. As my husband's doctor told me when I started this journey: "Do whatever you have to, to make it easier on yourself. And the sooner the better because they are not easy to move later." We've been in our new home 9 months. He has adjusted. I can hire help to allow me to go to neighborhood functions and support groups. I understand. I still miss my husband, too, and the man I care for is not the man I married, but you will get through this with love and prayers from all of us here.
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I did not tell my husband in the beginning that the caretaker was there for him. I would tell him she was there to help ME with the cooking, cleaning, etc. then, I would leave when she was there, telling him I needed to run to grocery store, doctor appointment, etc. Most agencies understand and will work with you.
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I have been my dad's caregiver for the most part for the last six months after had had a very bad fall but is getting around better with a walker...I thought about getting counseling to deal with my stress and it may be an option if I feel I need it...I have been lucky to know a friend in the same situation and we share ideas about products to use like adult diapers and bath products to use when a person needs to be cleaned in the bed...I found it has been a long an arduous road neglecting my own self to make sure the house was run and my dad's needs were met. I completely understand the situation and highly suggest finding a CD of relaxing music to play for yourself in the background when you can listen to it....it helps me alot. I also suggest just taking little naps even if in a chair for 10 minutes to recover from stress than starts when one stays up all hours...caregiving professionals are expensive but I have another friend that has used Visiting Angels to help with basic house work and meal preparation at one day a week for a miniumun of 4 hours.....each hour will run about 20 dollars...no other caregiving service will be any cheaper if they are any good..
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There are some people who want these jobs of caring for someone's needs. They're actually looking for them. If you have a friend who can post something at say, their doctor's office, please consider it.
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I too am a single person and lone caregiver. I'm known as the mega-multitasker, paperwork queen, supershopper, and OCD Organizer but the cracks are now showing. I'm dropping balls left right and center. The more i fall behind the harder i work at it. Im beginning to develop anxiety issues. I'm getting more and more frustrated with others who may have the best of intentions but have no clue. I've asked for help with specifics but people generally help with what they want to do instead of what needs to be done,if at all. People ask for favors, simple things really, that I'm good at, but don't offer to take something off my plate to accommodate their request. I'm told that I do an important job and should take care of myself but never a what can I help you with? Or a simple let me make dinner for you. I find just being the person in charge means everyone looks to me for instruction, direction and sometimes to hold their hand when really I need someone to just do the task, make a decision, get it done. I could go on and on and on....Sigh......

I cannot change other people. So I've learned and am continuing to learn:
I am not perfect and everything does not need to be done perfectly.
Say no. Sorry, but no.
There are only 24 hours in a day and nothing I do or say can stretch that out longer. Pick your priorities. You can only have 3 at a time max.
Don't be hard on yourself. You are not a comic book superhero.

This next one applies to your question and I found it a hard one to wrap my head around. ....
Make yourself a priority without questioning it.

It was always easy to put myself aside for someone/something else. It starts small and then snowballs and before long, it was like I didn't matter anymore. When I gave that vibe out I found that's what others began to treat me like as well. Not rudely or conscientiously, it was subtle but it was there.
Next step was to fight off the feelings of guilt I gave myself. I am proud to be a caregiver but I am not going to be a martyr for the cause.
Make YOU a priority in the top three of the to-do list. And you are not allowed to set it aside. It helped change my perspective and instead of always trying to find the time (never happens) I made the time.
I continue to ask for help and utilize whatever is available to me but I put down my expectations of others. Disappointment and bitterness became too heavy to carry. I made a few rules for communication with family and friends as well so I would stop wanting to beat my head against a wall.
Do not start sentences with you should or you need to....if it's important enough to point it out to me try putting it on your own priority list.

Don't tell me to take care of myself. I already know that and am trying to. If you care enough to point it out then please offer to help me with something so I may follow your advice.

Do not tell me that a task only takes ten minutes without offering a valid way to add 10 minute blocks of time to a set in stone 24 hour day.

Do not ask for favors. Offer to swap tasks or time. Otherwise the answer will be no.

Never assume that no news is good news. I may be fully capable and it looks like things are under control but they may not be. I shouldn't have to have the screaming meemies before people check in with me.

Do not ask me how I am if you are not interested in the answer and will gloss over it to get to what's up with you.

Do not get offended at my lack of socialization please. I love you but I just don't have it in me.

Unfortunately, anything or anyone that is deemed a time/energy sucker will need to be removed for the time being. No hard feelings.

This has now become a personal rant, I apologize. Your post stirred so many feelings within I guess I couldnt help myself.

Wishing you luck and sending out hugs.
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This is all good advice -- I hope that you can afford the costs incurred. :( That was my thought as I was reading the replies. I am caring for my 87 yr old mom, but I can't afford to pay for the things that would really help me. I, too, work full time and I'm exhausted most of the time. I would love some more detail on what someone mentioned -- that one gets less social security as one gets older. My mom's hasn't changed in the 25 yrs she's been taking it -- do I need to anticipate something changing in this regard? Thanks to all of you for your support! Teri
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mojo, that's a good list! I think the poster will find it helpful, and many others will relate. It is upsetting to feel like we're dropping balls or making mistakes... if you haven't lately, ask a friend to talk through it or try some journaling on your expectations on the quality and number of tasks that are 'necessary' throughout the day. I loved the other person's words on 'what can you let slide.' In little ways, I often notice that I'm the one who set most of the criteria I suffer from and they don't always match what's ~simply~ needed. You'll be a superstar either way, so why not review the lay of the land, look for info/articles online using keywords related to what would make you feel better and more in control.

Everyone's input has been so worthwhile to read, bless you all! You deserve help and answers, keep reaching.
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teri, one thing to consider is that these elders are not necessarily without resources, either... who does she know, what associations can she perhaps make to find someone who's in her league but just a bit younger and more physically capable, that she can ask for company or small doses of help? My mother (life-long pattern) decided she despised her nice next-door neighbor a year ago and would never talk to her. But Mom got sick recently and I think it dawned on her that here was this nice lady, right nearby, maybe she ought to play nicer with her. I could not have made that happen, but fortunately it came out that way (for now - until, hoping not, Mom gets po'ed at her again for a petty reason).

I don't know if this makes sense or is helpful at all, but just consider whether you have to be the one to come up with all the great ideas? When you're not there to make the right thing happen, what might she figure out in her own? Cheers.
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