Moving my dad to Northern VA and hospice care

[Anonymous]

My dad is terminally ill, lives out of state. He is getting frail and deteriorating. It is becoming difficult to keep going back and forth with my job. I also have children in elementary school so every time I leave town, there's a lot of logistically challenges. One of my children is high needs and things at home deteriorate when I'm gone.

I would like to move my dad to Northern VA as he will soon transition to hospice care. Our house has stairs and the bathrooms are not wide enough to get a wheelchair in and out of the bathroom.

I'm thinking of renting an apartment where I can stay with him.

is there a particular apartment building in the Tysons, Falls Church, Fairfax area that you can recommend with a first floor building that's wheelchair accessible? Also, if there a particular hospice in Northern VA that is better than others? I'm going to call hospice this afternoon to get more details but reaching out to others who have been there done that.

[Anonymous]

My experience is 5 years old, but Capital Caring provided skeletal Hospice services when my father was with them. At the time, I did not find another choice. It is very difficult to find hospice that provides 24/7 care in this area. Although, things may have changed.

He received a weekly nurse visit. Every other week social worker visit. 2-3 times a week a 30 minute visit to give him a bath. He was in hospice for a little over three months and the doctor came once-about three days before my father passed. They were good about getting him a softer cushion for his chair, a hospital bed with a soft blowup mattress and a bed chair to go to the bathroom. They were also good about getting us the morphine for the transition at the end.

The things that I did were:
Be with him 24/7, I gave him daily shots that he needed, I did daily wound care from blood blisters he received in the hospital on his heels. I gave him his medicine. I provided his meals and at the end I did the bathroom stuff when he was on the bed chair ( he took care of it until the last month or so), we watched tv, played games……. My sister was down for the weekend he ended up dying and we administered the morphine starting the day before.
He was in denial until about 40 hours prior to his death. The night when he figured out death was near was one of the worst of my life.

[Anonymous]

Following

[Anonymous]

Another +1 on Capital Caring. I had family members that used to volunteer there and had good things to say (as good as can be said, given the circumstances).

https://www.capitalcaring.org/

[Anonymous]

Both my parents used Capital Caring. It's a mixed bag. Some nurses are better than others.

They are a good resource for end of life planning. We found a lawyer through them who specialized in wills and made the process easy for my mom. I also used their counseling service.

I'm sorry you're facing this. It's a hard stage.

[Anonymous]

Anonymous wrote:Following

OP here. I called Hospice and they indicated that I could start my dad on Hospice out of state and then do a hospice to hospice transfer when he is ready to move here. My dad is very frail and I don't know how I can physically get him here. It's about a 14 hour drive. I don't think I can get him on a plane. In addition to cancer, he also has COPD and has respiratory distress on a plane. The other challenge is that home hospice only provides about 3 days/week visits for a nurse or home health nurse for a couple of hours. He needs a lot of help and care so I have to figure out how to provide that care during the hours that I am working. I'm just so overwhelmed trying to figure this issue out.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Following

OP here. I called Hospice and they indicated that I could start my dad on Hospice out of state and then do a hospice to hospice transfer when he is ready to move here. My dad is very frail and I don't know how I can physically get him here. It's about a 14 hour drive. I don't think I can get him on a plane. In addition to cancer, he also has COPD and has respiratory distress on a plane. The other challenge is that home hospice only provides about 3 days/week visits for a nurse or home health nurse for a couple of hours. He needs a lot of help and care so I have to figure out how to provide that care during the hours that I am working. I'm just so overwhelmed trying to figure this issue out.

Is he on Medicare? Can he go to a Medicare SNF or Hospice?
Can you (or he) afford a live-in CNA in his current state? This is what we had to do.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Following

OP here. I called Hospice and they indicated that I could start my dad on Hospice out of state and then do a hospice to hospice transfer when he is ready to move here. My dad is very frail and I don't know how I can physically get him here. It's about a 14 hour drive. I don't think I can get him on a plane. In addition to cancer, he also has COPD and has respiratory distress on a plane. The other challenge is that home hospice only provides about 3 days/week visits for a nurse or home health nurse for a couple of hours. He needs a lot of help and care so I have to figure out how to provide that care during the hours that I am working. I'm just so overwhelmed trying to figure this issue out.

When we faced this type of situation we investigated private transport in an ambulance, but it was a 7 hour drive not a 14. Is the 14 hours including stops? Because the transport goes straight through.

I wonder if a train would work.

You can also look at nursing homes in his area for hospice to go to.

[Anonymous]

OP, I'm sorry you are dealing with this. There are medical transport services (like an ambulance, or an air ambulance) but getting him here is going to be expensive. If you have he money to do it, it sounds like it would cut down on your stress.

I would think any relatively new apartment building is going to have a large enough elevator for him to get to his unit. I'd suggest a studio. Look for corporate apartments if you need it furnished. Even with hospice you are either going to need to provide a lot of care or hire people to provide a lot of care, or a nursing home may make more sense than paying a la carte for nursing care and equipment and housing. A lot of your options depend on how much money you have to throw at this situation and how long your dad really has left. If it's only a few weeks, I would not suggest moving him; take whatever leave you can and just go where he is. If it could be a year + that's obviously not a good solution. A geriatric care manager might be helpful to you in sorting this all out. Also, something to consider if he moves is whether there are any changes he'll need to his will and other documents, or his health insurance. Again, sorry you are dealing with all of this and I hope things calm down soon.

[Anonymous]

I think there are hospice facilities where they can stay. If your home won’t work, this might be feasible.
Once FIL was ill enough to be in hospice, he only left his bedroom when he was still able to walk to the bathroom. Soon, he couldn’t even do that and he was in diapers.

[Anonymous]

Anonymous wrote:I think there are hospice facilities where they can stay. If your home won’t work, this might be feasible.
Once FIL was ill enough to be in hospice, he only left his bedroom when he was still able to walk to the bathroom. Soon, he couldn’t even do that and he was in diapers.

Hospice indicated that patients usually only stay a few days to a week at their inpatient facilities. I'm surprised that when the person is at home, hospice only provides 2-3 visits per week. If my dad chooses Hospice with Medicare, then he gives up his benefits to see all other doctors which doesn't seem worth it for 2-3 hospice visits per week.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think there are hospice facilities where they can stay. If your home won’t work, this might be feasible.
Once FIL was ill enough to be in hospice, he only left his bedroom when he was still able to walk to the bathroom. Soon, he couldn’t even do that and he was in diapers.

Hospice indicated that patients usually only stay a few days to a week at their inpatient facilities. I'm surprised that when the person is at home, hospice only provides 2-3 visits per week. If my dad chooses Hospice with Medicare, then he gives up his benefits to see all other doctors which doesn't seem worth it for 2-3 hospice visits per week.

The things that made it worth it to use were the equipment. Hospice brought in a hospital bed with an air mattress that was much more easy on my father’s body. Plus, it was easier to get him out of bed and into his push chair. They also supplied a bed chair for toileting and lots of disposable pads and things. Plus, we didn’t have to figure out where to get them and what to do afterwards. They also gave us a transition kit that had morphine to help ease his transition. Once he was out of treatment, there was no real need for other doctor’s appointments.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think there are hospice facilities where they can stay. If your home won’t work, this might be feasible.
Once FIL was ill enough to be in hospice, he only left his bedroom when he was still able to walk to the bathroom. Soon, he couldn’t even do that and he was in diapers.

Hospice indicated that patients usually only stay a few days to a week at their inpatient facilities. I'm surprised that when the person is at home, hospice only provides 2-3 visits per week. If my dad chooses Hospice with Medicare, then he gives up his benefits to see all other doctors which doesn't seem worth it for 2-3 hospice visits per week.

I'm sorry you are going through this.
This area does not have in-person longer-term hospice like other areas have. Agree to the other posts that a lof of the answers to this depend on what resources you have to throw at the situation. Is a nursing home an option? I've heard because of COVID a lot have spaces now. They come with their own challanges.

[Anonymous]

Hospice does not provide daily care. It’s more support. You’d have to fire caregivers or nursing home. Montgomery hospice does have their own facility so that might be an option.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think there are hospice facilities where they can stay. If your home won’t work, this might be feasible.
Once FIL was ill enough to be in hospice, he only left his bedroom when he was still able to walk to the bathroom. Soon, he couldn’t even do that and he was in diapers.

Hospice indicated that patients usually only stay a few days to a week at their inpatient facilities. I'm surprised that when the person is at home, hospice only provides 2-3 visits per week. If my dad chooses Hospice with Medicare, then he gives up his benefits to see all other doctors which doesn't seem worth it for 2-3 hospice visits per week.

He can still see other doctors. He gives up things like ot and ot or anything that can extend his life. None of this is correct. We brought in hospice to the nursing home.