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My husband and I both had "no feeding tube" instructions, and when he could no longer swallow after a major stroke, I refused the gastric feeding tube for him and took him straight into hospice. He died after 3 weeks. I only hope that my children will do the same for me and not prolong my life by artificial means. It doesn't do anyone any favors, most of all the patient.
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AT1234 Feb 2019
That’s what I was wondering why do the feeding tube? This is hospice time. I mean, I’m sorry but I would refuse feeding tube.
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Start with Hospice. Medicare will pay for it fully and they will come and make an evaluation and then tell you and him what they recommend. They will not only help him, they are there to help you.
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It sounds like burn-out to me...
It's time for a heart-to-heart talk, revealing that you think it's time to consider care facilities...more telling than asking.
Are you his MPOA and POA?
Just don't tell him you guys don't care! That would really hurt. I mean, he doesn't want to be in that situation either!
You obviously have done a great job, yet it's time.

Once there's some space, perhaps you all will feel differently and be able to visit him, and the love and compassion for him will return.

All the best to your family!
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While reading your words, I was so afraid people would blast you for them. I am so pleased that they didn't and understood your feelings! I am not in the same situation, but a similar one, with my father. I post more on the Dysfunctional Family subgroup of this site. I have felt guilty that I don't want to, nor have I, given up my whole life to help with dad's ongoing and escalating health needs. I gave up most of my life, and had great stress, but am now putting my health,self, first. I won't go into all particulars...but,I still help a lot! He's in an independent care facility, but I've helped with many many health needs..and I still will, but I decided I will not give up my whole life. We can hire people to do these needs. I have felt guilty that I don't feel guilty that I am not going to sacrifice my whole.life for him. I will ensure he's safe, he also is of sound mind (tho sometimes an explosive temper to me), and he can make his own decisions. But I am happy to see someone writing on here, that is writing their truth, that I totally understand and agree with. Finding him help away from the home, is the answer...and you can visit with him. Good luck
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jacobsonbob Feb 2019
Very well stated; thanks!
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With the diagnosis, was there an Advanced Directive Written? Why isn't Palliative Care or Hospice involved? They can offer and provide support and options for the whole family. This is a terminal diagnosis with not much "quality of life" to look forward to.
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As MidKid58 said, you are left with another person, who “ controls” both of you. Perhaps not intentionally. But, even if he always was a difficult person, change is overdue! You deserve to attend to your life too.
Find a place of care for him. Take a deep breath and do it. I hope you have Power of Attorney. This is a brutal situation that must change.
Do not ask for his cooperation, even though that would be the best.
Make the decision for his placement. That would be the best for both of you and your family.
The “ emotional detachment “ you are going through IS one smart way to survive.
You have done so much! Give yourself credit and remove any
“ whys” from your thinking.
It is a tough bridge in this road and must be crossed. You will come out relieved and stronger.
Sending you hugs and positive energy.
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Lymie61 Feb 2019
I agree 100% that it's time for him to go to Hospice or somewhere else for care but I think one needs to be careful about not getting a spouse who is able to communicate and thinking clearly on board. The patient as long as they are "of sound mind" has every right and ability to refuse, POA doesn't give one the right to force something the patient doesn't want only to carry out what the patient does or would want (act on their behalf). So I would be concerned that approaching it as "you have no choice" or "I'm making this decision for you" might make him dig his heals in harder and refuse while using an approach that gives him option's or some ownership of the decision while presenting moving to a care facility as the only real option. Sticky I know but hopefully doable, it could be all in the approach!
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I think by the answers here it’s pretty obvious that he needs to go to where he can receive skilled care. You have to look at it from both sides. I would suggest too that you see a therapist that can help you through your feelings and also give you objective support. It actually wouldn’t hurt to schedule a session to include your sons as it sounds like there is a lot of resentment all around which can seriously interfere with compassion. working some of this out will be a gift you give yourself.
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All answers here lead to the same basic outlook: one person cannot take on the burden of being a sole caregiver. You are no good to the person needing care, if your mental & physical health are going downhill. You must carve out a life for yourself and decide just how much you can take on. It’slike the oxygen masks on a plane: take care of yourself first so that you are able to help others. No more martyrdom: taking care of yourself first will give you the strength to help others. And never ever be the only person doing everything - NOT EVER!
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Samlil, I have been in your shoes, and couldn’t agree more. For young people, circumstances like this bring their own sets of challenges. I took care of my husband for 10 years, and he died 5 months ago from dementia. He had horrible, unspeakable behavior, and I kept him home as long as I could. I also have a full time job, and luckily our youngest daughter lived at home to help with care giving. But I dreaded every evening and weekend, and my world was nothing but going to work and coming home to sadness and hopelessness and more work. He was with it enough to know how bad he was, but was still aggressive and impulsive. He spent the last 10 months of his life in skilled care, and while that eased the daily burden of care giving, it came with its own challenges. At the end of the day, I think I did the best I could.

Once I wasn’t having to do the full time care, I found I remembered our happy life together and the resentment lessened. Like you, I could see it slowly killing me. Nothing I could would change our reality, so preserving myself was my my best option.

i strongly encourage you to see a good elder attorney now. I did, and found that in certain circumstances (like mine and yours) Medicaid is available right away (I’m in Michigan, not sure if it varies by state). Good luck, and know you’re not alone.
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Care-giving isn't easy and it's not something most people can handle doing long term. I agree with the others who have said it's time to start looking into alternatives for his care.
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Sad story for all involved. Parkinson's doesn't take away your memories of who you are, or WHERE you are. It does take away the ability to express yourself. A "why" can go on forever, without ever being answered. Now turn it around. YOU are stuck in a place you cannot be heard. Imagine. If that question you need answered can't surface. The harder you try to spit it out, the more garbled you sound. I wouldn't wish that on anyone. You do have compassion hidden deep. Let it out. Imagine your situation reversed.
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Put him in a "facility". When you reach the point where your own health is at risk, it's time.

My ex reached that point six years ago. She said she wasn't happy.
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First of all I think you're very courageous to be this honest about feelings that probably more than a few caregivers share. You deserve a life, but your husband also deserves loving care. Maybe it's time for him to move to assisted living or even a skilled nursing facility. You may find it's easier for you to respond positively to him if you aren't dealing with a 24/7 situation.
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samlil,

Being a caregiver is SO HARD. I care for my mom with Parkinson’s disease. It will not get any easier. It never does. I am glad you are honest. You aren’t helping him or yourself if your heart is no longer in it. Set both of you free. It takes time to research facilities. Start as soon as you are able to. Ask others in your area who they like and don’t like.

I hope you will regain your life. I hope you find compassion again, not just for your husband but yourself as well. Think about any separation or parting of ways between people. Always nicer if it can be loving.
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jacobsonbob Feb 2019
Hopedly it's not a "separation or parting of ways" (that seems so extreme, as if they'll never see each other again), but simply a move to obtain better care. Ideally samlil will be able to visit and perhaps enjoy some time with her husband without having to be stressed by having to provide all the physical care.
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Wow, that's a lot for people as young as yourselves.

He needs a lot of care - cath and feeding tube, just for starters. 7 years is a long time. I think it is appropriate for you to look into NH care for him.

You are lucky that you have a good care team and that your sons are on the same page as you are.

Don't worry about the pollyannas of the world. I think they're either lying or just totally ignorant or in denial. Caregiving is not easy.

Try not to feel guilty for caring about your own needs. Your husband will be taken care of in a facility. Sure, it's different from being home, but it sounds like it's time.

Good luck.
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busymom Feb 2019
I agree with againx100 about looking at nursing care facilities. For those who "live" with loved ones who have Parkinson's disease, they soon understand the difficulties that are caused by this horrific disease. Even changes of furniture in a room can cause a Parkinson's patient to struggle. By all means, this husband needs to be in a "permanent" place. I don't see anything wrong with also getting a hospice consult. They may suggest palliative care, but with all that he has going on now, they may actually come aboard and provide extra care and coverage of many of the medical expenses (supplies and medicines), but the family would still provide the coverage for the nursing care facility.

My mom had Parkinson's disease (which never progressed as far at this poor man’s). Mom ended up with aspirated pneumonia due to her Parkinson's and that’s what took her to glory.

My dad could not take care of my mom's needs. He was older, but he was still fairly active. When we realized the level of care mom needed, we worked to get her into an assisted living facility. She eventually moved to nursing care due to a number of falls as her disease progressed. It took a team to care for her, and they did a great job!

Making decisions is not easy, especially when you're bone weary and mentally fogged. If samlil can take a break, I think she'll find all of life a little easier. It won't be wonderful, but it will be healthier.
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Sorry, I should have said - I personally feel that you would be doing the right thing. Your husband's illness is a complete and utter beast which no approach can make okay. Facing up to its realities and making a plan that makes the best of it for the whole family is hard, but right.

It's no use wishing that there were three of you, or that you were some kind of angelic supernurse who could take all this and come up smiling: a plan has to work for the people it's for.
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You don't need your husband's permission to *start* looking at care facilities. You only need to raise that difficult subject with him once you've found a facility you really like the look of.

So I should begin your research. This will make you feel a lot better from the outset, because at least you'll be doing something positive about the situation; and then, when you do need to involve him, you will be talking about his moving TO a place with important advantages for his care and his quality of life as opposed to moving out FROM the home because you can't meet his needs. This could make all the difference to how both of you feel.
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NeedHelpWithMom Feb 2019
I like that wording of moving TO a place instead of FROM home. Very kind and lovely way to express a transitional period. Transitioning for most people is stressful and I think you have just made it easier for everyone all around to better cope. Thanks! I am going to remember those words.

Of course, we can only hope and pray that those hearing the message will accept it well.
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Since you've already written him off, yeah you'd better do that. Also, why did you marry him if the age difference between you two is that great? You knew something like this might happen but you married him anyway! So that's on you girl. Personally, I'd never marry someone with that big an age difference but that's just me.
I'd say look into NH care and they'll help you figure out the financials of it. You'll also need to talk with an elder law attorney in the event you decide on a divorce, levels of care for your husband, when/ if he'll need Medicaid, etc.
Would gladly be more compassionate with you.... but I have to tell my Mom's NH which hospice agency I want for her today. Good luck.
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worriedinCali Feb 2019
Wow. It’s a 9 year age difference. How rude. A lot of things can happen. You could be killed in a car accident but is that any reason not to get married? No.
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Hi. I think you know what to do but are afraid of judgement Once you make up your mind to take the permanent care option you will feel better and probably also feel kinder towards your husband
as for those who Talk about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless " , many lie. It should be embroidered on a pillow
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mmcmahon12000 Feb 2019
No. Not when it's your mother it shouldn't.
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I would think the cost of caregivers you could afford an AL. Think its time. And please don't feel bad for your feelings. I have a feeling there is more to your story.
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You can't help or change what is happening to your husband.  You do have the power to change what's happening to you.  It's time..... 

God bless you and give you wisdom.  Hugs. 💙
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Look after yourself!!!! Do whatever is nescessary for that.
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"Most blogs I read no one talks about not wanting to take care of a spouse - it is all about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless "

I'm gagging...

How about you ask someone on those blogs if they want an extra privilege of taking care of your husband? They should jump for joy.
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Segoline Feb 2019
Ive seen those too.
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I don't mean these words as a condemnation because I think many caregivers have felt the way you do - I think that being trapped in a home dependent on those who are no longer able to show love and compassion is infinitely worse than the alternative.
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dlpandjep Feb 2019
Your gentle wisdom always blesses me cwillie.
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It's fortunate that you realize your limitations and have decided to have him placed for his care. Everyone is different and no one knows your particular situation. I would get a consult with an Elder Law attorney, who also has a Family attorney in the firm so, you can understand your rights and responsibilities from all angles. Finances are also important and I'd discuss the situation with the attorneys. I'd start researching facilities asap.
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We all reach a breaking point and sounds like you have reached yours. I imagine your finally being able to say what you have is, in effect, a great relief.

You need to start looking at facilities and talk to an elder law attorney.

Your sons may benefit from talking to a counselor of some sort.

Stick around. You will GREAT support and advice here.
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samlil,

Thanks for your honesty! I'm sorry you're going through this. You've reached your saturation point. You're burned out. Who wouldn't be? The fact that you feel "sadness and stress" speaks volumes. You actually do care.

On this forum, someone explained how the brain (during times of extreme adversity) creates a smokescreen of indifference to protect itself. It's a built-in shield to help us make it through. I've experienced something like it: a feeling of losing my humanity somehow. I went through the motions of caring for Mom but felt cut-off inside. It helped me through a awful phase when I was truly overwhelmed. Since then I've learned how to manage better. Feelings were restored when my psyche knew when I could handle them again.

It's not too soon to explore alternatives to caring for your husband at home. You have fought the fight and kept the faith. Maybe it's time to turn over your husband's practical care to professionals, so you can focus on restoring your physical and emotional well-being. There's no shame in this. By addressing your own needs, you'll be better equipped to care for your husband. It'll also help your sons.
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herdingcats Feb 2019
Lovely, honest, and practical response. I've not been in this situation but it sounds on point to me.
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It sounds like you will have to look at care facilities ASAP. No way can you continue to handle this. Hopefully once you move him you can regain some compassion. My dad was diagnosed with Parkinsons and/or some type of dementia and my mom became downright verbally and emtionally abusive to him to the point I had to move him to a care facility for his own good. When I moved him she said she didn't care what happened to him and never wanted to see him again. Now she spends her days alone with her guilt and I am the responsible party for my dad's care. My mom's callous and uncaring behavior permanently damaged our family and we will never be the same again.
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againx100 Feb 2019
That's sad, for everyone involved. I guess your mom's breaking point came sooner than expected but I'm sure there are many that are just not wired for care taking, for whatever reason.
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Do start looking at care facilities. My DH has put me through the wringer over the last 25 years--one major things after another. His health is OK, but there WILL come a day when I will say "I cannot do this and maintain ANY sense of self, much less love for you (he is a VERY VERY contrary and ornery patient). I've had 2 serious breakdowns AFTER he had "recovered" from the latest health crises lasting from 6 months to 18 months. Not one soul took care of me!

Take it slow. You are lucky you have sons who are on board. Check out facilites, take your time and be as loving to DH as you can be.

I have already worn myself to a nub with CG for my hubby and he still works FT! I am horrified, just horrified at the thought of him retiring, as he plans to stay in bed all day for the rest of his life.

People don't talk here about not wanting to take care of a spouse b/c it's not "nice". It makes us sound mean, when in fact, we don't know your backstory--and EVERYONE has a breaking point.

I hope other, who have had similar experiences with this weigh in on your dilemma. We still love our DH's, but it's as if THAT dh has gone away and we're left with this other person, we don't even know.

I sense love and caring beneath your exterior post. You'll figure this out, you dh is simply coming to the stage where you just cannot give him the care he deserves at home. You're not alone in this.
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mmcmahon12000 Feb 2019
So then, place him! He's gonna find out that if he tries to stay in bed all day in a facility, they'll have none of it. He'll then learn to be more respectful and grateful for all that you did for him. Go see a counselor and start taking care of you; your husband can take care of himself. (As he's so clearly demonstrated at this point. )
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You are already running a care facility, not a marriage. Have a look at other options, and tell him it will have to happen - no choice, you can't do it. Then with luck, your compassion and love will return enough to help you both.
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