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I'm a loving wife mother of two who feels like I'm being bullied by the state to go against my husbands' wishes.

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Often when a person with dementia says they do not want anyone in the house to help, they do not want to shower, they do not want to take their medications or anything else that they don't want to do you can not always abide by their wishes.
A person with dementia does not always know what is right for them. They do not know what is safe for them.
I am sure one of the concerns that your children have is that you are taking on more than is safe for you to handle.
When I was caring for my Husband I made safety the one thing that decisions would pivot around.
I said I would keep him at home as long as it was safe...Safe for me and safe for him.
If it got to the point where I could no longer move him or care for him without getting hurt myself I would have to place him.
If it go to the point where I could not move him without the risk of hurting him I would have to place him. Luckily with the help of the VA and Hospice I got the supplies and equipment I needed.
I am sure that you do not want to hurt your husband and if you got hurt what would happen to him and who would care for you?
As for your husband telling you he does not want anyone in the house he can not make proper decisions any longer. YOU are the one that is going to have to make the decisions.
Tell him YOU need help for yourself. You need someone to come in and help tidy up a bit so you can take more time caring for him. You need someone to help do the laundry. I think if he thinks that the person is coming to help you he might be more accepting.

Now we just have to convince you that you do need the help.
As I mentioned above...what happens to YOU if you get hurt, if you get ill and can not care for your husband for a week, a month, 6 months? Who will care for him and where? And who will care for you?

I will repeat this..your husband can not make decisions regarding his care..if you need help get it.
If you are the one that is also resisting the State or your children can force the matter and either the State or your children could obtain Guardianship. If that occurs all decisions will be out of your hands.

One last thought for you ..Statistics show that quite often the Caregiver dies before the person they are caring for. This is strictly due to stress and injury.
Helpful Answer (16)
Reply to Grandma1954
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Hold your horses a minute.

Having read those two brief sentences very slowly and carefully... I'm not at all sure what bullying is being done by whom.

Your husband's wishes are that you do not have in-home care sent in to help. Help with what? And if you don't have outside help, does your husband think it's not required, or does he think you can do it all?

Just suppose you were making this decision alone, leaving aside your husband's opinion just for a moment, would the in-home care be a help to you?

It certainly is your husband's right to refuse services. But it is NOT his right to demand that assistance from you instead, especially if he needs more than you can confidently manage.
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Reply to Countrymouse
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If your husband has dementia, he is not of sound mind and his wishes may very well not be reasonable. I don’t see your age but most people are unable to adequately care for someone with dementia alone. You may need to step back and try to view things more realistically. Why are you so against help? Sometimes it’s because we view it as meaning we are not capable to care for them. But when it comes to serious medical problems like dementia, realistically we aren’t . We can’t preform surgery either 😉, it’s out of the realm of our knowledge.
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Reply to Jannner
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Well if you aren’t providing the level of care your husband needs then the state can and will step in. Why do you feel that they are trying to force you to go against your husbands wishes? This is about what is best for HIM. What he wants may not be what is best for him.
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Reply to worriedinCali
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When my husband was in the hospital, with stage 4 colon cancer I told him he couldn't come home until the hospital bed was installed. He told me he did not need a hospital bed. I told him, "No, but I do. My 72 year old back can not take all the bending." He stopped for a minute and then replied, "You're right.". He came home that evening. The next day he told me he was really glad we had the electric bed. Sometimes it helps to show a different reason for a solution.
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Reply to Retirenurse
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MountainMoose Sep 8, 2019
Yes! It's not all about the person needing care, but also about the person who's providing it.
(8)
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fedup777, You don't tell us too much in your question, so I glanced at your profile, and you say that you feel that your state (Washington State?) is bullying you into going against your husband's wishes. I can only assume that his wishes are to stay in his home with you caring for him? Is he suffering from dementia at all? Are you able to care for him in the home, providing him care? If you are, I cannot imagine why the state would interfere unless a family member has reported that he or she fears that your husband isn't getting adequate care. Can you come back and explain to us what is happening to you? What kind of "in-home care" has the state insisted upon.
Sometimes, in the case of a bedridden individual, the caregiver is physically unable to turn adequately. That would be an example, because the patient could then develop sores that would be quickly life threatening. Sometimes someone calls for a wellness check, and Social Workers are assigned to do periodic wellness checks for adequacy of care.
Would love it if you were able to return and tell us more.
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Reply to AlvaDeer
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Need more information to answer this question properly.

At first I thought NO. You cannot be made to have in-home care.

HOWEVER, if your husband's well-being is threatened, yes, you probably could be forced - or face the consequences of charges of neglect.

This is why I kept my father and my husband ambulatory; I knew that God forbid either of them had broken a hip, I would have to make sure they got the needed care, even if against their wishes. You really don't want your loved one to hurt and suffer, and you surely don't want the state to charge you with neglect.

A living will only goes so far - if the person's safety is in question, you can either accept the in-home care or face having him institutionalized.
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Reply to RayLinStephens
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How advanced is his dementia?

It can be nearly impossible for one person to take care of someone with advancing dementia.
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Reply to againx100
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Face this fact. Most people do NOT want someone to care for them in their homes as they feel they don't need the help. And they do not want to be put into a facility. But that does not mean YOU have to endanger yourself for someone so stupid. YOU must come first. If every attempt to help fails and the results are causing difficulties and harm for you, then you have no choice. You either make them have a caretaker or else they get put into a facility - especially if dementia is setting in. It will become hell for you and destroy you sooner than later. Act and do something. And financially, there is help but you have to seek and find it.
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Reply to Riley2166
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If someone has complained to APS and they have investigated and evaluated the situation they can give you the option for homecare or LTC. They can become guardian if its felt your husband needs more care then you can give.
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Reply to JoAnn29
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