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.
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.
Everyone's input has been so worthwhile to read, bless you all! You deserve help and answers, keep reaching.
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.
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
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.
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.
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!
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.
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.
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.
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.
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.
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.
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!!
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.
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.