Charlie had an appointment last week with his primary care doctor at the local Veteran's hospital. I have written before about the marvelous facility we have just across the border in Vermont. (Read: A VA Hospital to Be Proud Of) His doctor there is the best I have ever encountered. He can see right through Charlie's acknowledgement that "everything is fine" and has noticed how stressed I am becoming over the deterioration of our situation.
The doctor suggested that it was time for us to consider placing Charlie in the Primary Care Home Program. This would bring health care workers, including a doctor, into the home to assess Charlie's needs, carry out lab work, perform physical therapy, supervise his medication and oversee his dietary needs in the home. They will also evaluate his situation and recommend further assistance from the Visiting Nurse Association and The Council on Aging.
My children have been pushing me to look into the available options for in-home care for Charlie. They can see the toll that the stress of his care is taking on my mental and physical health.
I have resisted up to this point; I feel like I signed on for this journey the day I said "I do." Also, I feel a bit like the boy who cried "wolf." As I read the problems on this web site from caregivers who are caring for aging parents and spouses whose conditions are so much more dire than Charlie's, I feel guilty for asking for assistance.
I am sure many of you are struggling with the same conundrum. We know in our minds that we need help, but for various reasons we are reluctant to reach out and accept the help that is out there, just waiting for us to ask. (Learn more: Why Caregivers Refuse Help)
Part of my reluctance comes from the fact that I know Charlie is going to start kicking and screaming at the suggestion that he needs help taking his shower or doing exercises to improve his strength and mobility. He also won't appreciate having someone fuss over his sleeping, eating and drinking habits.
The first visit from the Primary Care Home Team is scheduled for Wednesday. I don't think I will mention it to Charlie until I get him up in time for their 12:30 appointment. Otherwise he will dig in his heels and refuse to get out of bed.
The Visiting Nurses Association has yet to contact me to schedule a time for their first visit. I am dreading that one the most. When they tell him they are coming in to give him a shower twice a week, we may find ourselves in the middle of WWIII.
If he puts up too much resistance to these plans to help him (and me) with his care. I don't know what the next step will be.
I am considering the possibility of moving to an assisted living facility; there are several good ones nearby. There is also the option of receiving help from the Council on Aging to have a health care worker come into the home on a daily basis to assist with his care. I don't think we are at that point yet, but it is good to know that it is a possibility.
The last step would be to place Charlie in a veteran's long-term care facility. The closest one is about a two-hour drive from our home.
I recently explored the cost of private nursing homes in the area, and was shocked to learn that they run in the $9,000 per month range.I know he is not ready for a nursing home but it is important that I begin the investigative process so I can prepare for the inevitable. One of the veteran's counselors suggested to me that, due to Charlie's 80 percent service connected disability, he might be eligible for low cost care from that source.
I hope those of you who are caring for a veteran can be helped by what I have learned from my explorations. I am finally learning that the help is out there, but you have to ask for it. More importantly, the patient has to be willing to accept the help that is available.
It is unfortunate that patients with dementia have no idea how much care they eventually require and the toll it takes on their family. (By the way, the case-worker told me that they will not send their people into homes where there is a smoking environment. If you are considering asking for in-home care you must keep that in mind.)