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He can some some things but refuses. His right side is numb but he can hold some things. He had a brain bleed four years ago. And it affected his right side plus he has md. He is 72. He like to be waited on. I work 10-12 hours a day. He doesn't understand I'm tired.

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I understand. Perhaps his doctor can prescribe some home physical therapy. Approach it delicately. Like dad your doctor is sending someone over because it's too help you get better so your muscles stay strong.
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We have a similar issue both my sister and I care for our father. For the most part he doesn't want to do anything. He likes to be pampered. By the grace of God if we use a certain sharp tone with him he tries to comply from our frustration. All I can say is try to appeal to his better nature, if he has one. And if it is too much, think about a home health aide or if he has long term health care, put him uncooperative behind in a nursing home. Believe me, we're headed down that path. God understands.
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I struggled on in a similar situation. The very first time that your Father requires the intervention of EMS and Hospital, talk with the social worker at the hospital and make it plain to them that you cannot care for him at home. That will start the ball rolling in the right direction. I did what you are doing for years and was never sicker in my life. Everything in my life was let go, including children, work suffered, and I have paid a high price for that. It was difficult to let go, but now I meet with my Mother at the high-level assisted living facility, a notch below nursing home care, and I explain to her that she is there because she needed more than one person to care for her and that I was unable to do it alone. I see the wisdom and truth of that statement. I could have implemented this earlier but didn't know how, and nobody makes it easy. Also, I was afraid of the financial aspect of this but others have done this for their relatives without taking such a hit or any hit to their finances as I have to mine. I hate to fail. Sounds like you hate it as well. I am now thinking that you should contact the Department on the Aged in your Father's town and have a discussion in a panicked tone (I work 10 - 12 hours a day and cannot provide more than a short visit but he is unable or unwilling to help himself at all). Don't wait until you've cost yourself as much as I have by appearing so in control of the situation. I not only hurt myself, but my daughter since I was her only source of support. I am 65 years old now and my own retirement funds have been heavily drained to allow me to care for Mom during what would have been the best earning years of my life.
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Fellow posters: Laniece is caring for her husband, not a parent. I think the dynamics with a spouse must be quite different than with a father or mother and, while I am not in that position myself, I hope some folks reply who ARE. I hope you will soon read some really helpful advice, Laniece. It's always useful to have as much information as possible in order to give the best suggestions so you might provide more information while you are waiting for others to respond. Such as, what's your age and health situation, how long you've been married, was your husband this demanding before his illness, do you still work outside the home, etc. Most importantly, what, SPECIFICALLY is it that your husband CAN do for himself that you need/want him to do. Hopefully folks will have some really good suggestions for you if you can tell us more. In the meantime, I'm sorry for your troubles and hope this group of caregivers can give you some really good advice.
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I saw a comic strip at least 20 years ago, it still comes to mind now and then and makes me smile. A man walked into a disheveled family room. He looked at a sofa, it's cushions all out of whack. It said "lay on me". He looked at the TV, it said "watch me". He looked at the dog, it said "pet me". He looked at the pile of magazines all over the coffee table, they said "read me". He looked at the baby, it said "play with me". Later, a lady walked into the same room. The sofa cushions said "straighten me". The TV said "dust me". The dog said "feed me". The magazines said "put me away". The baby said "change me". :-)

What seems obvious to us, isn't always so obvious to them. Have you tried making sticky notes and leaving them on fridge? Like "Load Dishwasher Please", "Dust Living Room", "Fold Towels", etc. Mine is pretty much oblivious to anything outside of his own enjoyment. I used to get miffed, blow through all the work while he sat in front of the TV eating cookies, drinking pop, like a child in front of cartoons. One day my Father asked me, have you asked him to do anything? So I tried it, "would you please vacuum while I dust?". TV off, husband up, vacuuming, happily. (?) The second the vacuuming is done, he'll be right back on his butt unless I say "and the towels need folded and put away", ... I dunno, but it's like he thinks if someone else has it then there is no problem. Good luck.
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Laniece, you say your husband has Mixed Dementia, right? You called it MD. Is that what it stands for? If so, then I would discuss his progression with his doctor. I know it's frustrating to believe that a dementia patient is capable of doing some things, but they won't do them. Or to expect them to understand and appreciate the reality of a situation. It might help to learn about his actual capacity to do both. He many not have the capacity, though it seems that way.

My cousin has VD mixed with AD. By looking at her, you would think she can move her hands, fingers and feet. She seems to do use them well in some ways, like picking up food or moving in her wheelchair, but she is not able to use them in other ways. For example, she is not able to put her hand into a gift bag and put out the item. She is unable to put gloves on or to bathe or change her clothes. Her brain prevents it. Her brain does not allow her to move her legs after she stands up. She looks capable, but the brain limits it.

A dementia patient may be physically able to get out of bed, shower, prepare a meal, dress and sign checks, but they are often NOT able to actually do those things, because the brain is hindering them. And they may be able to do it some days and not others.

A dementia patient is not likely to grasp the number of hours someone is working and how that would impact your time in providing care for him. They don't understand the energy and time involved in their care. It's not his fault. He would have no problem understanding that before the dementia.

I would read a lot about Mixed dementia and how it effects the brain, movement and judgment impairment, so I could adjust my expectations and get help. Getting help to help you take care of him is imperative. It's almost impossible to do this alone in the home, especially working full time. I wish you both the best.
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Oh, see -- this is a good example, Laniece, of why people need rather a lot of information! I assumed "md" meant muscular dystrophy! Since you are on this site, I'm probably wrong and SunnyGirl is probably right, but all the more reason for you to tell us what he CAN do. And HOW is he "refusing"? Does he just not do it, or does he say he will but procrastinates and it doesn't get done. Or does he say, "I forgot" or does he say, "No, I won't". Really different behavior that likely requires different action on your part to get him going. And what does he do or say when YOU refuse to wait on him? Or do you never refuse? I LOVED "New2This" response above! Help us help you by sorting out which behavior is just "male", and which might be related either to his physical or mental limitations or to his personality/attitude. Let's first figure out what he CAN change and then we'll help you figure out how best to do that! Blessings to everyone who contributes!
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New2this, oh how true that is... it's the Mars vs Vensus and how each gender sees things differently :)
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Lolli47 - I do think your original point was an excellent one! I imagine the emotional turmoil of dealing with a spouse vs a parent would be very, very different! I pray I never find this out personally! Sure - the basics of guilt and frustration, along with sadness would be there in both situations - but slowly loosing the person who has been your partner in life has to be devastating!
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OH, I don't know. Maybe MD doesn't stand for mixed dementia. If not, then nevermind my post above. I can't amend it. lol
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Actually Laniece, I thought md in your message meant medication.

Is that what you meant?
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And I thought md meant mild dementia.
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MD stands for muscler dystrophy. So all together he has been in a wheel chair since 2004. He had a stroke 5 years ago
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Oh, okay. In that case, I might investigate any new treatments they may have available to help him. Here's a link. Apparently, there are medications that work in some cases. Does he have his pain under control? Sometimes pain can cause the patient to not want to move as much.
webmd/children/understanding-muscular-dystrophy-treatment

Does he receive physical therapy?
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My husband was diagnosed with mixed dementia in 2011. I was very frustrated for the first 2 to 3 years because I had a hard time understanding whether he was lazy or incapable. Your mind wants you to think 'lazy' because 'incapable' is hard to swallow. I started making notes, for example, he could follow directions if he read them but not when you spoke to him. He could shave, but ignored the left side of his face etc. Last year he sprained his knee and I insisted that his PCP prescribe home health physical therapy (part A medicare). BTW, the drs. think a person with dementia will not benefit from physical therapy. I used the opportunity to grill the therapists on other aspects of his physical capabilities... the best help I've had in 5 years.
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Good, it's helpful to know what you meant by "MD"; thanks Laniece. Now if you will try to answer the rest of my questions (Lolli47), we'll all try to get on target to help you. Don't worry about how well you spell or type; we can figure it out. And just short phrases like" "married 20 yr; I'm 68 and have ____, he's always been this way or "been this way since stroke" -- whatever the FACTS are. We don't need perfect writing just facts. Hang in there, kiddo...and feel hugged! Lolli
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Has ur husband seen a neurologist since his bleed? If no PT, OT for a while Medicare may OK some in home. They will be able to tell u his limitations. If they agree he is capable to do certain things then tell him they r his responsibilities. He is probably better doing things for himself. Ten to twelve hours is a lot. Try to explain that you can't do it all. Bet if it was him, it would be his excuse not doing anything around the house. 😊
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Ok - my husband has vascular dementia, is 75, and we have been married 51 years. Last week he had a major TIA, turning him from fairly impaired into an invalid. When I try to tell him why I need help or why not to get up at 4:30 am, it is useless and has caused a lot of frustration on my part and probably him too.
Then I remembered the Serenity Prayer- God Give me the serenity to accept those things I cannot change, the courage to change the things I can, and the wisdom to know the difference. My mantra the past few years has been "It is what it is, but it will become what you make it". It's on a small plaque that I got from one of my catalogs. And yes it is still VERY hard to remember these in the wee hours of the morning or changing smelly diapers, or scooping poop off the floor. At least he still feeds himself. Good luck!
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I am disable somewhat and so is husband. he refuses to help out at all. will not go to nursing home or hire help. will not asked grown daughters to help. however, he goes out in care alone to eat or shop. I've been asked out of town for Christmas, but would feel guilty leaving. WHY SHOULD I FEEL GUILTY?
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Call in troops to help you help him. I don't know what you mean by "md" - is it mild dementia? At any rate, he needs help and if you can't or won't do it, find some professionals who will.
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Fellow posters: I'm fairly new to this site in comparison with some of view but I find that it is really almost NECESSARY to read all the replies as well as the original question. Depending on when you replied if each of you had done that you would know that Laniece has given more information along the way AND that her husband has neither medication issues or mixed dementia. He has Muscular Dystrophy. This is an important outlet for everyone but I would also like to suggest that people really REPLY to this poor woman. You can describe your situation to the extent that it is comparable or that you've learned something that would be relevant to the questioner's problem, but it's not fair to her to just vent. Start a new post with your own question and get the comfort and help you need from people who are responding to YOU. Please consider whether what you are posting is 1) RESPONSIVE to the question you are supposed to be answering and 1) HELPFUL to that questioner. A number of the replies above miss the boat on one or both points. As a community often in pain ourselves, I hope you agree that we can do better. And I wish all of you comfort and peace and even joy in the new year. Lolli
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We've been married 34 years, he was a truck driver up till he fell out of his truck on his back, when he had back surgery the dr saw that his tissues in his back didn't look normal. He had always had trouble walking and falling a lot. After further testing he was diagnosed with muscle r dystrophy. After he was-diagnosed the dr order him a wheel chair because he was falling a lot. Then he had a stroke about five years ago. He's on medication for pain and blood pressure.
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Move him into an NH before you drop over from caregiving burnout!
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Is MD Muscular Dystrophy? Mild Dementia? What is the age difference between you and your spouse?
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ferris 1 thanks for feedback. I've already tried everything I know how to do. have been unable to get help with his personality like it is.
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This is my situation exactly.

I began to notice about a year ago or a tad more that my husband (suffering from a blood disorder) was actually happy to let me do things for him rather than to do them himself. For only one example, let me go pick up his prescriptions. That was a change, and I asked myself: ok, how far is he going to take this?

In roughly six short months the answer was in: He was going to take it all the way. I am now in charge of everything. I must oversee everything. I must identify where there are problems that need to be fixed. I must fix or have them fixed. I make all appointments, see that we get there, check and order prescriptions, etc., etc., shop, cook, set the table, clear the table, wash the dishes, do the laundry and the garden, raking, pruning, the car to the mechanic. I make all phone calls and e-mails--he can no longer do these things.

I have a new understanding of the phrase: doing the best he can. This is not my former husband. He would never do this to me or to anyone. So, I have gotten past the anger. I do feel frustration at times. But I understand this: it is up to me to make this doable. And lately that has meant changing the way I do things. I now cook super simple meals that do not take me more than 10-15 minute in the kitchen. I make a lot in advance, like pot roast or spaghetti sauce, or big piles of mixed vegetables so that I just have to warm things up.

The other day, he wanted to know if I was going to do laundry. He had laundry to do. I asked politely and kindly why I had to do it. And, after a moment of silence, he went off and did it himself.

Recently, I have also decided that less than perfection is fine. If he starts a sentence and doesn't finish it, I just let it go. I don't want to know the end of the sentence because it might be a request. We don’t talk a lot anymore because there are so many unfinished sentences--and I am ok with that. I try to DO things with him. We take rides, walk the beach, play with the dog, watch Netflix.

I intend to continue to seek out ways to change our lifestyle to make it less work. Stay tuned. You’ll be hearing from me.
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We do have a aid that comes 4 days a week. Helps with his bath and change his bed and cleans up after him. My thing is he refuses to try to help himself. Thelma your situation sounds a lot like mine. You try not to be angry having to take care of everything. I eat alone, go to town or where ever alone.
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He is seven years older than I am.
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The only thing I could add is maybe get him signed up for palliative care - they could come in and help. If he is like my father, an attractive female who makes a fuss over him will probably get him to do for himself.
This is one thing that really gets to me ... I don't mind doing something that a person cannot do for themselves, but the have to step in constantly for things that are THEIR responsibility is very aggravating.
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That is do true. If you talk about without kids , his think I don't love there dad, while mine dislikes him for not thinking about my feeling. Do I have to watch what I vent about.
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