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(Adult boys, 1 sister - all in their 40's). My husband's dementia has rapidly progressed. I stopped working to care for him, he is no longer walking, incontinent, dealing with bedsores (he does have air flow mattress) his legs, arms and hands have began to contract, he has very good appetite but sleeps most of the time. He is in bed most of time because I cannot lift him out of bed myself for I am only caregiver. I signed with Hospice because insurance would no longer pay because he was not progressing in therapy. He has Medicare as primary insurance and BCBS secondary. I am in process of reapplying for Medicare after being denied. My question is: Is there anything I can do as far as his body contracting. Hospice is palliative care so there is no help there. Another reason I signed with them is to have a little help coming in and I cannot get him to the doctor without vehicle that is handicapped equipped. Problems is his family, they don't offer any help and rarely visit or call. One son visit on Thanksgiving(first time this year) upon leaving he calls his family members saying his Dad is at his end, he is all crippled up, etc. They are not providing any assistance in helping their Dad but can always put out the worst on me and I shouldn't let it bother me but it does. Three boys live here in same city and never come by, the one that visited Thanksgiving lives approximately 350 miles away. I am just so fed up with them, I am actually glad they don't visit more often but I am tired of hearing these bad things I guess I should just tell people tell me of what is being said that I do not wish to be apart of hearing anything negative from the immature children.
Does anyone have any suggestions. I am doing the very best to care for their dad and my husband but this negativity coming from them does get to me.

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Here are a couple of responses to the negative feedback:

"You're welcome to come by & help anytime, since you're not satisfied with what I am doing."

"If I am doing a bad job, tell me exactly what you'd do differently." And then invite them to come & do it differently themselves.

"When is the last time you visited/called to find out how your father is doing?"

"Please feel free to pay for someone else to come here & improve the care your father is getting."

"Would you like to split up the responsibilities of taking care of your father? There's more than enough time for all of you to switch off taking care of him."

"Perhaps you'd all like to come by & hold your father's hands to help him not contract & get so weak."

"Go f*** yourselves."
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Your description of them answered part of your question. These are 40 year old boys and girl. Not really blended if they talk that way about you. You cannot make them grow up or be responsible. You can take care of your husband and yourself. Gossips that tell you of negative things all the time are not supportive. As you said gently tell them you have no time for negativity. Have you contacted the Agency for Aged in your area? They can also give you leads. Many cities offer handicapped accessible buses for transport at reasonable cost. You cannot fix narcissistic. Or stupid. Just protect your spouse and yourself. Document everything. (Hugs)
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Rest assured none of their comments have any reflection on you! Anyone who listens to them without responding "Oh my, and how are you helping that overworked and stressed out wife? is just as guilty as the kids. You are doing the best you can and that is all any of us can do.

Until they give you a month's vacation and take care of their Dad, don't pay any attention to them.
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I cried when I read these posts because I just lived all of it. Grown step-son 20 minutes away, wife an Rn, no help, judging me, hostile toward my attempts to get step-son's help. Such anger towards me was eating me up inside while I took care of his dad 24/7 for 5 years! RE: Husbands children: I finally just mentally 'divorced' the step-son and his family and it felt so good not to care anymore. The magical thinking on my part that the step-son/family would want to help his dad, the unrealistic expectations on my part, based on how I cared for both my parents until they passed, ate me up inside. Once I mentally accepted the step-son/family was never going to help, it actually allowed me to depend on God alone for the strength to care for my husband. RE: medical care for your husband. Once in hospice, they are to come to the home and the patient is not suppose to leave for any doctor appointments, nor should there be any physical therapy. RE: your husbands progressive loss of body function. Exactly what ferris1 stated, the signals from the brain are short circuiting and his limbs are not getting the signals. This will work its way up his body (as should have been explained to you by the doctor to 'hopefully' diagnosed his condition) and eventually the brain telling his lungs and heart to function will note make the connection to those vital organs. Avoiding bedsores is of great importance and Hospice needs to be assisting you with that. Feeding him as he loses the use of his arms needs to be continued, just keep in mind his ability to swallow will start to be compromised and food intakes (size and consistency) will need to be adjusted accordingly. RE: getting help, I pray you can get enough mental energy to start looking into and/or insisting on more help from Hospice!. Where I live and I believe the standard, Hospice and Palliative Care are two separate programs. You must get a diagnosis from a Neurologist and/or his doctor stating he qualifies for Hospice to be covered by Medicare. If that doesn't work and since he is on Medicare, insist the doctor have him transported to the hospital for evaluation [ask hospital about Observation vs Admission]. The law requires hospitals to provide in-home after care for Medicare patients b/c if the patient gets readmitted w/in 30-60 days, the hospital gets fined. That process would get you 'in the system' which would provide you more help and direction, hopefully. I just checked on the web for Hospice services in Odessa Tx (I grew up in Plainview Tx) and they exist. My heart breaks for you, wish I could do more to help. All I can say is 'hunker down' with your husband and try to spare yourself more stress where possible so that after all is said and done, you can regain your own health. I lost mine. My prays are with you.
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Did your husband benefit from the Thanksgiving visit? Was he able to recognise his son and appreciate his presence?

If not, and if there is no prospect of his doing so with any of his other family members either, you are off the hook. You can safely and with a clear conscience leave these people behind. They need no longer exist to you.

But if you feel there is any benefit to your husband's quality of life that his children or his siblings could possibly add, then for his sake it is worth making a very carefully targeted effort to involve them. They will still be nothing to you, but you can set out to make it clear to them what they owe their father/brother. It is then up to them to pay up with their time and attention, and if they don't it won't be your fault.

As you say, quite rightly, this is all about what is best for your husband. That is what you are giving all your strength to, so you have the right to decide: are these people any good to him or not?

Incidentally, don't waste valuable mental space on what is said about you by people you despise. Their opinion is worthless.
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Follow your own instincts! Family members who don't help will be judged someday. Try not to let them influence you! God bless you!
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Hugs hurtingheart
I understand what you are going through with the "family", I have the same problems with my husbands siblings....not one helps or visits, but, likes to talk trash about me, I don't understand why, except it is their short comings and guilt. I care for my husband 24-7.


I don't have the energy to worry about them anymore..my husband needs me and my strength so that is my focus.

Hugs to you.
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Your first question relates to contractures. No, there is nothing you can do to stop this. It is the brain's way of shutting down muscles. Secondly, do not talk to anyone who relates the adult children's attitudes since they are not a part of his life. Just tell "them" you do not want to hear how they bad-mouth you. You are doing the best you can and that is all anyone could do. He will be going soon, and then you never have to speak to his children again if you do not want to. I have a similar situation with my husband's daughter, so hang in there!
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I agree, you are doing a fantastic job, and it's unfortunate that Hospice isn't doing more. Have you tried calling them in to re-evaluate him for more services? It sounds like he should be eligible, and maybe Medicare would step in now (I don't know all those rules, but ti's worth finding out).
As for the 'adult children'... it seems there is nothing coming from them at all. Not sure if they have always been this way- what was their relationship with your husband before he became ill? Perhaps they were kept away from him or they were told things that may not have been true... but no matter the reason, you have become aware of the fact that they are not going to be of any use to their Dad, or you. You can ask them to leave if they do show up and become offensive. You can tell them that their Dad needs help, but I wouldn't hold my breath and wait. They don't sound like they'd have the faintest idea how to help and would not be motivated to learn. Regarding the stiffness in his arms and legs, you could ask the Dr for something to help him 'relax' and then try to gently stretch and move them several times a day. Some of that stiffness is inevitable. Again, ask if he can have a physical therapy consult for comfort (that fits into palliative care category- don't be shy about 'pushing' them. One visit should give you the kind of info you need. Also- SPEND any kids' inheritance on their father! Get the in-house help that he needs, and take a break whenever you can. Best of luck in getting through this.
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Don,t know the circumstances sourounding your marriage but it is often the case that following a divorce there is resentment towards the new wife. All you can do is let it go and get on with the important job of caring for your husband.
it does sound as though he is progressing fast enough to be eligible for full hospice. Is he too young for regular Medicare? Is he on disability? Do you want and will you be able to keep him at home? Regular hospice allows a five day respite admission every benefit period ask if this applies to palliative care too. That would at least give you a little rest.
if he is a Vet he may be able to go into their residential facility. The hospice social worker should be able to help you with this. As far as the contractions are concerned Ferris is correct there is no treatment. If he lives long enough his whole body may curl up into the fetal position. you definitely need to involve hospice in the care of the bedsores. If you are not satisfied with the level of care from hospice and there is an alternative preferably not for profit you are free to transfer to their care. Be very careful with feeding.Puree everything and give small mouthfuls and watch to see him swallow. Sit him up to feed and have a drink available to wash things down. If he starts to refuse food don't force it.
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