After 30 years of being wife /carer, I’m tired. My husband was diabetic before we met. Didn’t take any of it seriously, drank heavily, smoked. My role as wife has always been the carer. He’s now reg, blind, has copd, heart disease, some fluid on brain, poor mobility, dementia. I do all care, assist with wash, dress, shower etc. I do all blood tests, injections / insulin. Count carbs in food accordingly. We did have a little care help, but government have now moved financial goal post, so we can’t afford help. I’m doing job of nurse, but I’m NOT A NURSE. No time for me. I can’t be ill, no time for friends, family. I just feel what about ME? After 30 years, I’m thinking of nursing home permanently, but the guilt holds me back... why?
A definition: "Guilt is a cognitive or an emotional experience that occurs when a person believes or realizes—accurately or not—that he or she has compromised his or her own standards of conduct or has violated a universal moral standard and bears significant responsibility for that violation." (wikipedia)
Note the somewhat highlighted "accurately or not." You have not, nor will you be violating any standards of conduct or moral standards. What guilt might do, if you let it take over and keep your husband home because of it, is lead to a health issue or worse for YOU. Then where will he be? Obviously he cannot care for himself. If you end up in a hospital, unable to communicate, who will know about him and ensure he is cared for? If you become injured or disabled, it will become an IMMEDIATE emergency to see that he is cared for. Be proactive, not reactive!
Yes, you made those vows "for better or worse", but getting him into a skilled nursing facility where he will be cared for IS still honoring those vows! It is not like you want to drop him off someplace and wipe your hands of him. You want him to get care but you need your sanity back too. You said yourself you are not a nurse. They would have nurses to provide the care he needs. You then will be able to spend time with him, and enjoy the time you have left together as husband and wife instead of spending all your time playing nurse, nanny and cleaning service!!! There's no guilt in that!
Many here have given you wonderful advice, and examples of their journeys and how it has worked out for them. Yes, pangs of guilt may still poke at you, but once the onus of all that caregiving is lifted, and you can spend QUALITY time with him, those will diminish.
As others have advised, start looking for a good facility AND visit with an elder care attorney who can assist you with financial concerns. Assets like your home can be protected and other assets allocated so that you might qualify for Medicaid and/or Veteran's benefits. Finding a good place will take some time as there are so many who need this help, so it is best to get started now and in the meantime find a good attorney to work out the finances. Our mother was moved to MC facility January 2017. I asked the other day how many residents there are (she was the first in MC - place was torn down and rebuilt into IL/AL/MC.) I was told 18, which is the maximum. The woman went on to say that all three levels are full (they opened in stages starting in the fall of 2016) AND there is a current WAITING list of 60! There's no time like the present to get started - you might actually find that during the process of finding a place your mood might actually improve!!!
you feel guilty because you aren't sure if they will give the elderly person the care that you think they need or deserve.
Elderly Abuse: no matter how great the place seems, those lawyer commercials are always showing an elderly person being hurt or verbally abused.
You are 'used' to the person and still want that person around no matter how frustrating they are.
You are worried that the person may hate you for doing that to them or your family members may hate you.
This is what I have been wrestling with, but at the end of the day, I know that I can no longer subject my family to this and therefore the move is going to happen.
Husbands diabetic nurse came yesterday ,
Not been since December , ( a review ) etc ,
Not seen matron we have either since December .
Having chatted a talked if recent blood test results
“ and how r u coping “
I feel abandoned , it’s all left to me
“ I’m not a NURSE “
We talked of extra care ,,we can’t afford it
We talked of voluntary care , they can’t do medication or injections ,
We talked of sit in care , to watch my husband sleep
And so on ,,,
A HUG GIVEN !
When the lovely lady left ,
So No help . Just ME ..
I’m not going to rush to look at nursing care ,
But this year hopefully , gradually .. I can get the advice I need
Talk to my G P .
And maybe by end of the year ,, my husband will have nursing care , in a suitable home , I will always care for him , be involved in his care ,,,
This will be my last year of doing it all on my own ,
At times our home is a battle field
Many times a unhappy place for both of us ,,
I wish for my husband to be able to be aware and adjust before , the dementia really takes over him , again THANKYOU for your support ,, it’s been so helpfull
I have appointment with my G P .
Monday ,, my arthritis is painful ,,, and I shall ask for advice
COUNTRYMOUSE, Wow! Amazing answer.
MATT (LSTUSCANY), your answer is so touching that made me cry! It describes so well, so simply and sincerely what us caregivers face.
SONIA, the only thing I feel I could add to the great advice you’ve received here is that maybe a better way to approach your decision is revisiting the WHY you want to do this.
I think you feel deep inside that you want to place your husband in a nursing home because of YOU. You are clearly saying you want your life back! You know you’ve been in a way his nanny, his mother and his nurse for a very long time. And Sonia, while all that is true and valid, it shouldn’t be really the *based on love* reason to put a loved one (husband, parents, child, etc) in a nursing home, correct? Because you’d be selfish then, because you wouldn’t be loyal to him and to yourself, because you’d be just taking the “easy way out”, Correct?
Well, look at the situation realistically. Your husband’s situation is bad, very hard to handle, and will become worse. You are tired to a point where you might even subconsciously resent him for the life you’ve had. You might be depressed too.
So, the question becomes:
If you were looking for a nurse or a caretaker for your husband, would you hire yourself in your current condition?
If you were to compare yourself to professionals, highly trained personnel, emotionally detached and used to deal with everything, how would you rank up?
Exactly.
So Sonia, I don’t think you’re placing you husband in a nursing home because of YOU. You are placing him in a nursing home because you are a good, conscious woman that understands her limitations and wants your husband to be well taken care of. Am I putting words in your mouth and making this sound justifiable?
No! those are really the right reasons and they are so true! even if you hadn’t looked at the situation with the proper lense.
Go back to your main duty as a wife Sonia, which is to love him! Care for him by making sure he’s receiving the best care possible. You’ll feel more in your loving wife role once you stop trying to wear the many hats you’ve been wearing which have made your marriage morph into mostly a caretaker-care receiver relationship, where neither one of you is receiving what you both deserve and need!
May God bless you and give you peace!
You can't sacrifice your physical or mental health for anyone else. And, I'm sure they would not want to push you to the brink.
Start on the journey. Have a friend or family member help you along.
We'll be right here for you.
I cared for my wife with advanced MS, and her now 105 year old mom. Wife for decades and gma for 16 years. Couldn’t continue with it physically, and didn’t want to emotionally. They desperately didn’t want to go in a home. My wife was depressed and quiet, gma asked why I couldn’t continue and cried. My heart hurt, yet had no choice really. It’s now been 3.5 years after. They see it as their home now. They smile, they’re happy, and it’s special for all of us when I get there to spend time. I try to visit daily if I can. But sometimes I play hookey and like it!
After caregiving for so long, something happens to your mind set. I think, for me, I had to justify why I had to continue. I had to find a reason that compelled me to do things I had never done and never wanted to. The thought of putting them in a home went against the reasons that made me ok with what I was doing. I don’t regret those years but, I felt like a traitor of sorts. Our daughter helped immeasurably with her compassion for us all. But sometimes, you find situations that don’t have the answers you want, to make you feel okay. Some things, like caregiving, leave you with unfixable upset and guilt. It was part of the process for me. It’s been really tough, but much better then it was. I needed to take that step, and not second guess myself as I did. You’ll hurt before you feel relieved, but you will feel relief. I can’t tell you what to do, I can only offer up my experiences gained after 35 years of MS.
All of us on this site have pain and experiences we didn’t want. So here we all are, on a helpful site of caregiving people, who share their pain and offer up, in hopes it will help someone.
My heart truly goes out to you. It will work out, and you need to believe that.
Didn’t mean for this to be so long...sorry.
Matt.
I know that it is so very difficult not to feel the guilt since all of us took a vow of for better or worse, sickness and in health till death do us part; but at some point even these vows are broken, but when does one decide?
No, I am not going through this with my husband nor he with me, but I've seen it with my grandparents and now my parents. I will say that God broke the mold when he made my step-father and I really think he has a direct line to God.
Our daughter who is an RN feels guilty that she moved away from our home State 3 yrs ago because of Mom's condition(s) now, which includes the diabetes. Daughter shouldn't feel guilty because she couldn't see into the future nor any one of us.
We've lived out of State for 15+ yrs now and believe you me, I feel so much guilt for not being there for Mom right now and not being there to help on a daily basis as I do not have to work outside of the home and I always helped Mom.
I am however, doing everything I possibly can to help Mom and my step-father. I am contacting every single State agency there about not only help with in-home care, food delivery, small house keeping duties etc. Your tax dollars go toward these agencies in some cases OR they are non-profit and need to prove to the State that they are in dire need of larger grants.
Yes, some of the agencies are Medicare certified and are paid by Medicare for the services they provide.
Yes, some require a bar criteria with financial ability to pay yourself.
Yes, they also have services to provide you with respite so you have time away for yourself. It can be anywhere from few hours to 4 hours depending.
Yes, they can provide nursing services during the day via Medicare grants
In my home State, the YWCA provides all types of services, but in particular areas of the County; they can make exception(s) if necessary.
Look into the SAIL program which is run by the State.
Do you attend church? Perhaps you could ask the ladies committee for help. There are some churchs you may find on line that will provide you with help too.
Since you stated that in-home care was taken away by Medicare, have you even looked into what it would cost to place your husband in a nursing home? I contacted several in-home care companies JUST for 3-4 hours 3 days a week for Mom. Suffice it to say, it will cost me....NOT MEDICARE....ME, $1500-$2000 a MONTH to just get a small portion of services Mom needs. NO HELP FROM SIBLINGS.
A nursing home......you're looking at about $30,000-$50,000 per year; unless you're willing to place him in a facility that takes Medicare patients, BUT you will still be required to pay a portion and they're not really all that great.
Be sure to check your State law too. Some States can require you to sell your home to cover the costs. States like Ohio changed that law about 6-7 years ago, until they did, the spouse still in the house and able to take care of his/her self would have to sell the house and also liquidate assets to pay for nursing home.
Sorry, but perhaps when you're husband is asleep you may want to start researching on your laptop. Trust me, it is tedious, depressing and frustrating beyond any expectation. You'll run into more walls than you ever thought you would.
If you think filing your income taxes is a headache.....trying to get State government departments that know what the right hand is doing while the left hand is doing something totally different will make you want to SCREAM AND LASH OUT.
Contact your district representative or even your US representative and inform them about your displeasure trying to find help for both you and your husband. THIS IS MID TERM ELECTION YEAR AND THERE ARE MANY A LOCAL AND STATE REPRESENTATIVE/SENATOR WHO JUST MIGHT BE WILLING TO TAKE THE TIME TO HELP!! My husband was in the Navy when we married. He had a medical condition no one could explain and he was being used as a test sample for all types of allergy medications in Walter Reed. I called Senator Barry Goldwater and talked with his personal secretary; I used this as he was a close family acquaintance, but the men in black were at Walter Reed the next day, interns running all over the place trying to find my husband's charts etc. Husband called and said WHAT HAVE YOU DONE NOW? I told him and he told me what was going on there. My husband was honorably discharged within the week as he could no longer be stationed at any naval base in the world....which is required medically in the Armed Forces.
Find the weak link.....look in the dark corners of government and you may find the answer....like I said, Mid-term elections!!!
I promised my husband that I would never abandon him, that I would always be his advocate, I would always be with him often, I would always see that he had the best care available. If it ever came about that the best care was in a care center, I would continue to love him and be with him often.
Sonia and T, if I had made that promise to either of your husbands they would be in nursing homes by now. Doing your best for someone has to include acknowledging when your best isn't the best available under the circumstances.
Don't ever abandon your husbands. Don't ever drop them off somewhere, wave goodbye and never look back. If you do, you deserve to feel guilty. Act honestly in love and there should be no room for guilt.
Time to look after yourself. (((((((hugs))))))
thing to do is go to a brain surgeon-not me. I may be a great person and want to help, but you should not let me do surgery of any kind on anyone. It is not evil of me because I cannot perform brain surgery. Each of us are given resources to offer to help others. We are not their Messiah (Jesus already did that). We can offer only what we have but we cannot supply what we do not have. There are only 24 hrs in a day. We cannot give
36 hrs. There are other people who can help us with our mission. Sometimes it is so
easy to see in one situation, but hard to transfer those truths into other situations. I am not saying you should or should not go the NH route. Truth can be embraced, and then
look for what options embrace that truth. I would suggest make a list of all the issues
involved. Sort them into groups of connected issues. Then look at them separate from
the big picture and find out what is real and what is perception. Once you have the
"truth" from each facet, look at those to be the factors in the big picture. I have found
that a lot of times, I have been faced choosing between A and B and not even considering
C and D which I had no idea even existed. My mom is on Hospice now and I have been struggling trying to figure out how and what to do, only to discover there is respite care,
volunteers who come in and "baby sit" so I can go out, people at church who volunteer to help, family who volunteer to cover for me.... I do not know what relief is available for you, but I hope this will help you see beyond the wall you are facing.
You can do this, you have been a good and faithful wife and now he needs a village to care for him. You can see him as you choose, when and if you choose. Be kind and gentle to yourself, this is a big change for both of you. God bless you for all you do for your husband.
Please come back and let us know how you are doing. We love to help and hear success stories, rants, vents...whatever you need to do. You will get support for your decision and the rough spots that are bound to come. Hugs and love to you in this hard trial.
Both my parents and my husband asked me to promise and I told them all that it was a promise I couldn't make with a clear conscience. My mother quit her medications without telling anyone and it was a very rough last 6 months for her. My dad lived another 7.5 years and we moved him into a new mobile home in our front yard and he ended his last week on Hospice. My DH is 96 and still here at home. As long as I can keep him ambulatory, I can manage.
I like to call this the flip-side of my wedding vows but really? It goes way beyond that. I do it out of love and he daily tells me how thankful he is for me. It makes it easier.
But I have read a lot of posts here at AgingCare and not all caregivers are thanked, much less appreciated. When it turns into a burden, you have to think of alternative measures.
Even wedding vows..in sickness and in health..until death.....
But when it gets to a point when your own health is at risk, when the person you have loved and cared for, took those vows with does nothing to care for you back (and taking care of his own health in a way show disrespect to you as well as himself) you need to put yourself first.
(Isn't that what they tell you on an airplane?)
Placing him in a Nursing Home, Assisted Living or Memory Care if his dementia is to that point, will allow you to become his wife again not his nurse, caregiver. He will have care 24/7, you can not do that. He will have trained professional people to care for him, almost no one can afford that at home!
And unless you have a house that will accommodate his continued decline you may have to do that if he remains at home.
Do not feel guilty....he should feel guilty being the cause of many of these problems.
Do not feel like you have failed...he is the one that has failed in caring for himself, he could have made his life better.
You've done the angels' share of the work. Start that road to the nursing home. You must take care of you too. {hug}