My husband's body is shot but his mind is great

Hi ckh,

I'm so sorry your husband's health is so bad.    Eight years is a long time. 

Something interesting I've found is that setting a tone with healthcare professionals with regard to my loved one's care has really made a difference.  Several years ago my dad was put in a rehab facility after having severe complications related to the removal of a brain tumor.  And when I say "rehab facility" mean, with no uncertain terms, nursing home.  I saw exactly what you described - end of life care.  And that was exactly what my dad did NOT need!  He was there to get on the road to recovery and ultimately come home to us!

Just after arriving at the center, we requested a meeting with those who would be responsible for his care.  Prior to that meeting, we had a family meeting where we developed a strategy.  We were going to make sure everyone knew we were relying on their support to get dad out of there.

At the meeting, we talked a lot about how we would be there to help them achieve goals set out for Dad by the physical therapists.  We set up a second meeting with his caregivers to track his progress. 

I wonder if doing something similar in your husband's situation would work.  I realize he's not going into care for rehab purposes, but entering a care facility doesn't mean there's a timeline on life.  Make sure everyone there knows he's there to be cared because his care has exceeded your ability to give it at home.  Make sure HE lets them know his mind is just fine.  I'm really hopeful the two of you can shape the experience you have.

Best of luck and please keep us updated!

Is it possible for you to get some help from a home care agency.  This can be a positive alternative to a long term care facility.  Nurses could come and set up his medications aides could bath him.  You could also get some respite care so that you could do some things for yourself.  You have done a wonderful job of caring for him 8 years.  I would encourage you to find a good home care agency to help you.  take care and God Bless.

I second what Jaye has to say. If your finances are not exhausted, they will go a lot longer by paying a live-in home care aide (or a 12-hour shift aide), which will give you the freedom to get out for breaks. And if your finances are exhausted, In most states Medicaid will pay something towards the cost of having an in-home aide.

And don't forget about emotional support for you. The Well Spouse Association (http://wellspouse.org [wellspouse.org]) can help there.

I came to a crossroads over the weekend and, as I thought and prayed about our situation, I found myself thinking "take the advice you've so often given others," and reach out for help. I don't know how much longer I can take care of my husband at home while still working full time. First thing Monday morning I called the nursing home where my mother-in-law spent the last 5 years of her life. The same administrator is still there and she was very helpful. She told me to call the Dept. of Social Services (I'm in VA) and they will send a nurse to the house to do an assessment. Then, I will know what level of care to seek.

Good luck, redhat pr. Not sure where you are in VA, but I am in NOVA, and am in a support group for the Well Spouse Association, http://wellspouse.org . Members in the area may be able to help if you have questions.

Wellspouse, thank you. I'm in SWVA. Spoke with Social Services this morning and we are going to start with an evaluation by the Health Dept. to see if he can stay in the home with community based assistance. If approved, it can be for up to 40 hours a week. We'll see how it goes. This is so hard to do but I feel I have no choice.

redhatprincess, my sister did the same thing, she had the community based assistance for her husband and this gave her much needed time for herself, she was very tired, so don't feel guilty, you can only do so much. I am taking care of my husbands handicapped Mom who is 87, for almost two years now, her daughter will not help out, and my husband is also handicapped and i am getting tired. Medicaid is sending paperwork and a caseworker will come out and evaluate her for placement in a nursing home. Her family does not help out but are up in arms over a nursing home. Myself I feel taken advantage of.

Well, it's been six months since my last post and we have decided to keep my husband at home for as long as we possibly can. We will do that by using in-home caregivers as often as needed. I had a lightbulb moment when I realized that, if I'm going to lose his income to get qualified for Medicaid, I might as well use his income to keep him at home. You simply must do what you have to do so that you are taken care of. As for family being up in arms, they'll get over it - or they won't. That's their problem, not yours. My preacher brother-in-law called me the Devil's instrument when I put his mother in assisted living several years ago, but he wouldn't take care of her. So, I did what I had to do and let him work it out. God bless you.

thank you my dear, your right, the family would have to deal with it. So you mean my mother in law would lose her deceased husbands income if she goes to a nursing home?

Well, I'm in Virginia but I think the spend down is set by Medicare so it's pretty much the same throughout the country. If one can't private pay for nursing home care, you have to do a spend down to reduce the patient's assets to a certain limit. There are very specific things one can keep-the house if there is a spouse living in it, one car, $2,000 in cash, etc. You would need to consult an attorney with expertise in elder affairs or the League of Older Americans.

she makes under 2,000 a month. they would put a lien on her house which sits on 3.48 acres of land. who do you contact for inhome care? I"m so new at this.....

Can someone pls tell me what is the life expectancy of someone with pulmonary hypertension. My Mom is 75 and has this. She feels weak most of the time and very tired. She has to take breathing treatments and wear a CPAP at night. She isnt diligent in doing those things. Her Dr has told her those are very important things to do. She is not in great health and has alot of physical limitations. She is also very overweight..I would say morbidly obese. So what am I to expect with this ? She and I would really like to know the life expectancy.

TThe best thing is to ask your or her doctor....but she does not have too long, especially if she is not doing what she has been told to do. She must also take the proper meds.

I wish you the best...Charlotte, ALIG

I am located in Summit County , OHIO. I am a private in-home care provider. I hopefully will not have to go to work for an agency. Agencies charge by job responsibilities and I think that stinks. I have been independantly caring for elderly in their homes for six years. 5-22-10 my last client that I had been with for two years, weekly for nine hours a day ended when he was admitted to an assisted living facility for mentally challenged. I cried as much as the family but he was becoming violent and personal bathing was a battle. So the decision was made for everyones safety. I get assignments usually from local church pastors so I hope I won't be out of work long. I usually charge $10.00-$11.50 an hour depending on how far I have to drive. I try to do anything the family asks of me: Persaonal grooming, meals, laundry, lite housekeeping, taking them to appiontments, and generally loving them as my own grandparent. I am 56 years old, woman, and count this as my calling.