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?
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.
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.
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.
Wishing you the best of luck finding a solution to this problem.
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
That would be my 1st step, asking for assistance from my employer in accomodating the situation.