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My husband is on Hospice. He has a complicated medical history coupled with advanced dementia. He has been in declining health for 2 years with increasing ER visits, hospitalizations, rehab stays and has nearly died several times. Finally, rehab said he was no longer a candidate for them; Medicare agreed; and the hospital and his doctors said there is nothing more that can be done for him and to call Hospice. It was a difficult decision but I did and my son and I have had him home going on 4 months on home Hospice. He requires assistance with everything. My husband is bed bound, though my son is strong enough to get him into a Broda chair on wheels a couple of hours a day.


I was told he has 6 months to live. When he came home for the hospital he was in bad shape. But being home has been good for him and he has improved to the point where he is eating and drinking. Because he is eating and drinking I'm told he may have some time - which is wonderful. The trouble is, I'm really worried about running out of all my leave options and having to return to work fulltime when he is most in need. I cannot afford to not keep my fulltime career, nor can I afford to hire additional help in the home. I'm paying for as much help as I can afford already. Has anyone else experienced this? How did you handle it?

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I understand I had to put my dad on Medicaid. Hes in a nursing home because I can't do it all myself. It sucks I know but you also have to take of you. Good Luck
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Reply to BabyBrooksK
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Lisa you need to return to work. Have you talked with the social worker of the hospice about how you might be able to have him moved to a hospice house or other possible solutions. Do you have a nursing school or CNA training nearby? A student may need an internship which could help.
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Reply to gladimhere
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LisaFrank: In answer to your question, "how long will he live?," only the good Lord knows the answer, IMHO.
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Reply to Llamalover47
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Have you talked with your employer about a temporary job that you can do remotely? Perhaps some reduced hours or split days, maybe they can brainstorm with you to come up with a viable solution.

That would be my 1st step, asking for assistance from my employer in accomodating the situation.
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Reply to Isthisrealyreal
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Hi my dad has a progressive vascular Parkinsonism. I live & care for him. He has swallowing difficulties so I puree his food & he is incontinent. I had to give up my work to care for him. I now have to have carers help 4 times a day with hoisting him from bed to commode / chair. If you had carers they could pop in & help. My dad has to pay £328 per month. This is for just daytime care. He also has an alarm on his wrist so that if he has a problem he presses a button & a person answers & asks if he is ok. They can either phone an ambulance or the two phone numbers that you give that are willing to pop in to make sure he's ok. This is in the UK.
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Reply to Drivesmemad3
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I agree with asking hospice to place him in a hospice facility. They are much more prepared to handle all the care he needs at this point. My Mom was placed on hospice in her memory care facility. It was a life saver for me because the nurse was allowed in for all but the first month of Covid-19. They recertified her every few months for 2 years during which she contracted and survived Covid-19. More than once the hospice nurse reported a down turn and that she might be transitioning into active dying, each time she rallied. Finally after 2 years she graduated off hospice and 6 months later is still physically with us. Her Alzheimer's is so advanced she has no idea where she is, who I am etc. It does not matter at all whether she is at "home" or in a facility. She does not know "home" her brain is totally broken. Our nightly prayer is for her to go, continuing to live like this is not life. I know you don't want to lose your husband, and no one can tell you how long he will live. Rather than wearing yourself to exhaustion and reliving the trauma of daily care, let hospice help you, so you can be just his wife and have quality time with him.
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Reply to GrandmaC
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With poster working or being paid for full time work, household income is likely to exceed limits to qualify for Medicaid. Putting someone into a facility and having Medicaid pay as some have suggested is not automatic and may not be possible.
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Reply to RedVanAnnie
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Everyone on Hospice is different and hard to say how long they will live but as you already hzve been shown,, most people on Hospice and are living in a Nursing Home die before 6 months. Of course getting love and care and just having that safe feeling of being at home instead of some cold strange place does wonders and they can live twice as long as they would have.

it also has to do with how much medication you allow husband to take.

I didn't have my Dad take anything that wasn't truly needed because anything you take can cause effects.

I would only give something if he was in pain.

Your husband is fortunate that he gets to live out the rest of his life and die in his own home and he's in much better hands at home then at a Care Center as they are understaffed and not a nice place to live.

That is why he is better because of the love and care you and son are giving him..

If husband has been in the Service, Contact the VA and he could be eligible for up to 30 hrs a week Free Caregiver help.

Since he is bed bound, you don't have to worry about him getting out of bed and falling down so
You might install a camera so you can check on him anytime 24 7 from your phone or lap top when you have to be away.

Maybe you can schedule someone to drop by a couple hours in the mornings and a couple hrs in the afternoon to check on him when you have to be at work.

If it isn't medically necessary, don't need the expense of hiring a Nurse, if you hire a Caregiver direct, just like a Baby Sitter, you can find someone for $10 an hr.

Prayers
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Reply to bevthegreat
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GrandmaC Nov 27, 2021
Bevthegreat Where in the world do you live? Private caregivers even without formal training charge at least $15-20 per hour most even more. 15 year old babysitters earn $10-15. Your constant vitriol comments about care facilities is mean and inaccurate. You obviously had a bad experience, but they are not all a house of horrors.
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See if you can get him into a hospice facility and if not, you may have to place him in a Skilled Nursing Facility with Medicaid paying the bill, if he qualifies. While that scenario may not be 'ideal', if you need to work full time and cannot afford in-home caregivers for him, you have no other options that I can see. My mother had a friend who lived for 3 years on hospice; she kept getting recertified while living in an ALF b/c she had a terminal illness, but she wound up living for 3 years before she finally passed.

Wishing you the best of luck finding a solution to this problem.
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Reply to lealonnie1
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My husband too had many health issues and after almost dying from aspiration pneumonia, and developing sepsis and septic shock, came home completely bedridden and under hospice care in our home where he lived for 22 months. My husband was in pretty rough shape when he initially came home, but over time he improved greatly, and hospice said it must be because I was taking such great care of him that he continued to live for as long as he did.
It's very hard and tiring, this I know and my heart goes out to you. I was fortunate that I was actually out on workers comp when my husband was under hospice care, so going back to work at that time I wasn't concerned about, as I wasn't physically able to then. I consider myself very fortunate that I was able to be with my husband to the end,(as hard as that was)and that he was able to die at home like he wanted to.
Everything will work out as it should, just let God handle it. And enjoy whatever time you may have left with your husband, as only God knows the day and time that He will call him home. May God bless you and keep you during this difficult time.
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Reply to funkygrandma59
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My Husband was on Hospice for almost 3 years.
His diagnosis was Alzheimer's. I also think he had Vascular Dementia.
Your husband will go through a "recertification" process for Hospice to continue. As long as there is a "documented decline" he will most likely be recertified.
If his care at home gets to be more than you can handle talk to the Social Worker and the Nurse from Hospice. They can try getting him into a Memory Care facility or Skilled Nursing facility. (quite often Hospice can find space more easily than someone might if they were just calling.)
You can also ask Hospice if you can get a Volunteer to help out. The Volunteer can come but do NO hands on care. They would be limited to doing light housekeeping, sitting with your husband. This would give you a chance to get out and get things done for yourself.
Is there a Work from Home option that you can discuss with your boss, Supervisor or HR? That would keep you working and still able to help your husband.
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Reply to Grandma1954
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Lisa, your profile says that you husband has cancer, as well as his dementia and some chronic conditions. You need to know firstly that hospice is paid for by medicare only if the patient is expected to live no longer than six months, and for the most part this is what the "diagnosis" is about suggesting that MD believes that the patient will not survive more than six months. My brother's ex is currently on hospice and they have now given him another six months despite the fact he really doesn't have a disease other than alcoholic encephalopaty. He needs the extra "care" to stay in his assisted living, and thrives on the attention and care. So they kind of "pad the diagnosis" with "liver disease" and other things to keep the care.
So your doctor remains the one to tell you his "best guess" as to time left, and remember that this is ONLY a guess. Often patients thrive under hospice and palliative care. No more onerous routines, hospitalizations, fear of same, medications that a meant to treat but often harm in doing so, and etc.
Do speak with hospice also. They are likely to qualify him for more time if needed. It is important you share your expectations of what your husband would want, what comfort measures he requires and etc.
No one can tell you, even if there is a serious terminal illness, how much time someone has. You have chosen comfort care now; your husband may do well with that, or his "recovery and improvement" may be brief. Speak with his own MD and with his caregivers who can give you more clues as to what to expect. Meanwhile attempt to take it a day at a time.
I wish you the best. I am hoping your husband won't have to be in in-facility care if that is not what you want, but there is absolutely no guarantee that won't be the case if you must keep this current job.
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Reply to AlvaDeer
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Myownlife Nov 27, 2021
This "6 month rule" is no longer true. Hospice does not require a person to be expected to pass away within 6 months. Not in our area, or bordering counties.
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