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You did not describe how disabled your wife might be. Is she bedridden? Mentally alert? Capable of any activity at all?

My father was sole caretaker for my mother for 47 years after she became paraplegic in her 30's. She was physically dependent on his care and as her needs increased over the years, my father would learn necessary new nursing skills to be able to take care of her.

My mother was mentally alert and could manage limited household tasks as long as supplies and tools were put within her reach if she was to be left alone. While my father was still working, he would get my mother up and dressed and prepared in the morning, wheel her to the kitchen where she could at least move around the room in her wheelchair, and make sure she had the telephone and tools and supplies were within reach. She was not able to move from room to room by herself, so there she was until my father got home.

They were married for 54 years and raised four children. Social gatherings, family trips and so on took more planning and preparation than they would for a family without a disabled member, but accommodations were always figured out and arrangements made and that was our normal life.

My mother was forever deeply grateful that her husband was such a capable and caring man, and my father was devoted to her and was happy and fulfilled that he was able to take care of her. Maybe my parents were unusual in how they dealt with their lives, but they were certainly a wonderful example to their children.

Forgive me for indulging a personal and perhaps irrelevant story, but jjas57's message brings back memories of how my parents dealt with their caretaking situation.
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cherokeegrrl54 Dec 2020
Thank you for posting this loving message about your parents and family.
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Sickness and in health?
I'm sorry. It sounds very difficult.
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Sorry this is brief but I don’t have time at the moment for a detailed reply. Bless your heart.

I don’t know all her medical history so keep that in mind when reading my comments. Lorazepam for anxiety is not the best idea. It does work well in the the short term but it’s addictive and make be making her tired. There are other more modern anti anxiety meds that might work better although they take time to kick in. And if she’s been on lorazepam awhile she might need to be weaned off it slowly due to addiction.

Lymphoedema is a real pain. Literally. Lots of doctors do not understand it properly and think it is the same as pitting oedema. It’s not. But you can have both. Pitting oedema is caused by excess fluid build up usually in the legs but can even be in the arms and trunk. If you press with a finger and hold it for a minute and then move it and it leaves a dent, that’s pitting oedema. Diuretics might help to shift it as well as tight stockings. Lymphoedema is different and has more to do with the lymphatic system and is much more difficult to treat. If pressing firmly with a finger is painful and doesn’t leave a dent it’s more likely to be this. But there are good clinics that deal specifically with it that she should take advantage of as good treatment can be transformative.

I suspect that her worst and most limiting problem is her anxiety. It will make all of her physical issues worse. Lots of things can help with anxiety including medications, counselling, CBT, cold water swimming, exercise etc etc. Her solution will depend on the background of her anxiety.

sorry to be so brief. There have been lots of great responses. Most importantly is that you sound burned out and need to remember to look after yourself. Remember that in an airplane emergency they say to put oxygen on yourself first, not to be selfish but so you are then able to look after others.

May God bless you and keep you and make His face shine upon you and give you peace.
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I saw on here that you are 69?. Was she sick before the marriage? I am 76 and my paraplegic husband is 78. He had a spinal stroke at 66. I have been his 24/7 caregiver for 12 long years. He is bedridden and covered in bedsores. Hospice is coming 3 days a week now. I know he won't last much longer. We were married 10 years before his stroke. I now share with him the happy times because he now has dementia. It helps us both I think. Sometimes I feel cheated out of 12 years of my life. I only have 2 close friends now, the rest disappeared when he got sick. I have given up everything I loved. Dancing, metal detecting which was my hobby and good exercise as well. That's alright though because I promised him I would never put him in a nursing home. He is still my soulmate. Check in your state for Counsel on Aging or with Lt. Governors office for assistance. You can apply for money to help pay for respite care. I received $500. to pay someone to stay with him so I could take 4 days off. I'm sure you have mixed emotions right now, and I understand what you are feeling. Anger, guilt, cheated, etc. All of that is normal. You need to do what is best for you. Remember the only one responsible for your happiness and well-being is you. God Bless you and may you make the right decision. You only live once.
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Sle247365 Dec 2020
Love your post. My parents were married for 64 years and she died at home in his arms. He had been her 24/7 caregiver for 9 years and did have help come 3 days a week for the last year (family). He took care of her and 7 children. For her last 7 months he was diagnosed with prostate cancer but kept going BECAUSE he promised her he would never put her in a nursing home. He didn't seek treatment until after she passed. He told me that as she died, he held her and said, "We did it mama. We did it. Raised our babies and we made it." Now, at near 91, he has dimensia and I have taken care of him for 8 years. We have an angel from Heaven that came to live with us and takes care of us both as I, too, have fallen ill and am nearly bedridden. Prayer sent her to us. That slow goodbye as your loved one forgets who you are HURTS. You know that and is why I responded to your answer. I am moved to tears over your beautiful words and advice to someone I feel is looking for someone to tell him it's ok to leave his wife. God bless you. We will meet someday and I will give you a huge hug and thank you for this...
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When you are the sole caregiver, it is overwhelming and exhausting. Try finding a support group. Google Alzheimer’s and/or your local hospice group. They may have online support groups you can join. I have one I go to every Friday morning. I wouldn’t miss it. It’s through hope hospice in RI. Wh have members from all over. Good luck and find time for yourself!
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When I was caring for my dad, I started writing down everything that happened that day because it was all coming too fast and hard and I'm a habitual notetaker. I bought a big spiral-bound notebook and just put everything in there.

What surprised me, though, was that by doing that, I was able to offload a lot of my stress simply by having a place to put it. I'm not like some dreamy 16-year-old who writes down all her hopes and dreams in a diary, but I found I was putting down thoughts and fears in addition to all the factual stuff I needed to keep track of, and by offloading that stuff, I felt it gave me an ability to go on longer than I might have otherwise.

I know very well what it's like to feel like you're running out of gas, so you need to find ways to give yourself a little more rope when you feel like you've come to the end of yours. For me, writing it all down then putting a away worked.
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You are not alone. I've been a 24/7 caregiver for my wife for over 8 years. I read all the previous answers to your quest fro advice. Read them all and think about them. Come to terms with your situation. Get help even if just a few hours per day or of and on through the week. Keep yourself physically fit. if you need to fight depression, See your doctor. Come up with some other interests either in or out of home. Some things you can do with your wife or things you can do with yourself outside or inside. Check with your Aging Care resource either in your city/town, county or state. Lots of help out there. Is there a caregiver support group locally?
Best of luck to you and your wife.
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Imho, every caregiver needs respite from time to time. Prayers sent.
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I wonder if you've thought about your situation in terms of grief. Grief for what was hoped for and talked about. The loss of a relationship - marriage - in the way that you envisioned it. And just when you were starting on that journey together.

We talk in our society about grieving someone's death, but that's not the only kind of grief there is in life. You've experienced a significant loss that's disruptive, emotionally and physically draining. For me, it took moving through stages of grief, especially anger and depression, before I was able to move on to acceptance with my husband's situation. In our case, it's a matter of the long good-bye - dementia - along with chronic health problems.

You've received lots of good feedback here. I know that I am truly grateful for all of the wisdom and experiences people share so freely. I hope you'll find what you need, too.
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It's hard to take care of our loved ones that are ill, so take time for yourself everyday to de-stress and ask God for guidance. Keep in mind that the Pandemic has taken a toll on all of us. I'm sure that if the roles were reversed, that your wife would gladly take care of you, Remember your marriage vows '. . . for better or for worse, in sickness and in health. . .'. I'm praying for you and your wife and your marriage. Blessings.
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Sle247365 Dec 2020
Thank you for your post. I agree 100%.!
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What an unusual ordeal to go through. Speaks volumes of a very nice person in a very unlikely situation!
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I understand completely where you are coming from. Not every person is suited to be a caretaker no matter what the past relationship was and if that is the case, you have to be honest with yourself and face it - it is a normal feeling in some cases. I firmly believe that when we have done all we can do and the impact of the patient's behavior and problems are deeply affecting us and our own quality of life and over time would destroy us, we must make a decision to either get caretakers to relieve us for what we are not capable of doing or we place them. I think you are at that point. Please start looking at options. No one has the right, regardless of what is wrong with them, to destroy someone else's life.
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Sle247365 Dec 2020
Marriage is for life, not convenience.
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My husband said the same thing but on our 25th anniversary and he left. My parents were married for 64 years and my mom died at home in his arms. Did you marry as a trial period or for better or worse? TALK TO HER! You don't need advice from people you don't know to justify your wanting out. Talk to HER. Tell her, gently, that you are burning out and ask for her help using all the love you had on the day you said I do. That's if you want decades together. If not, you'll be doing her a favor to leave. The more frustration and burnout grows will put both of you in an abusive marriage. God said for life so please don't insult Him by fooling yourself into thinking He would understand. That may sound harsh but I have seen this many times from many angles. If you're going to pray, pray that He gives you both a renewed love through thick and thin. Bad times come and can last a long time but good times also come. TALK TO HER!!! be patient with each other. God DOESN'T give us more than we can handle. You will find He is the latest, on time God!!!! Hang in there until you TALK TO HER and THEN, hang in there some more!!! (& more. Trust Him, put Him first. The rest is easy.)
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Did you not know of ANY of her health problems before you married? If so, did you take the time to research what her problems were and the prognoses of each. Sounds strange that after just 6 months she suddenly became so ill with so many things...
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Answer to sle247365

Your view of Nursing Homes can be real.  My friend's husband of many years also had a long-term illness.  She was so against Nursing Homes for the same reason.  She took care of her husband for several years.  I remember running into her in a store and she had a knee brace on because she needed a knee replacement.  She said she had a few hours of respite each day and was glad of it.  Her husband had fallen a couple of times and she had to lift him or get help.  I know the burden was great for her.  Any way I got a call from a friend 2 weeks ago saying she died suddenly and her family was scrambling to find a nursing home for her husband.  She was 73 years old.  She died caring for him and he lives on.  I feel so bad for her and him.  But there are times long term caregiving can be risk to health and life for some caregivers.
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Firstly, God will give some of us MUCH more than we can handle. I assure you, as I feel like I am on wash, rinse, repeat every day. God has heard me say "I can't do this" many times.

This is said often, but harder to do...you must make time for yourself. Don't forget what makes you feel better. A sport, a movie, a walk, keep making time for yourself. And I know this is hard to do when we have so many other pressing things to get done in a day and always in the weeds.

See your doctor if things get too much. Sometimes we can get insomnia and that doesn't help matters. Or we get digestive issues, or other health issues crop up from the stress. Get help from your doctor. And get help with the everyday things too, like house cleaning, meal prep, etc. I know this might be impossible during the pandemic, but when feasible, get some relief this way. If you can stay covid safe, hire a caregiver several hours a week to help you. And go do something else when they are taking care of your wife. Do NOT stay in the house every day of every month. You must get out at least a few hours per week for your sanity.

Will your health insurance cover any services that might help you? Please think about meeting with her doctor and discussing caregiving options and respite care. This is most important to you right NOW. You need some support. When it's time for hospice, please consider it, and get as much time as they will allow. I know how hard it is to do the physical care daily for someone. It will beat you down. Think about calling Office on Aging, social services. Speak to a social worker, case manager, and have them advise you on what your wife might qualify for in terms of help. At one time, I used meals on wheels, which was a great help to me.

It is a very challenging and difficult job, caregiving. Hope some of my advice will be helpful to you.
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Silver,

I used to scream at God, “Do you hear me, see me, care about me?”
I did that daily for years on end. I knew deep down that He cared but caregiving surely is a challenge!

I totally agree with your posting.

Thanks for expressing your sentiments. Many feel the same way!
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