Learning to Ask for Help When Dementia Care Becomes Too Much


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.)

Marlis describes herself as a “Gramma who loves technology and has a lot to say.” She blogs about whatever catches her interest: food, books, family and more. For AgingCare.com, she writes about the issues facing the elderly and her experiences caring for her husband, Charlie, who suffers from dementia.

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Love this article! My goodness, I could step into Charlie's home and feel he is exactly like my husband who was diagnosed 9 years ago with Alzheimer's. And when the article mentioned anything new or invasive would start World War III---believe it! I have no help, and my husband refuses (without a screaming tantrum) to have any help. Being alone without any family nearby or having support, I feel trapped and yes, resentful. But, what a truthful and discerning article. I thank Marlis for being 'spot on.' God bless you. You made me feel 'human again....'
Oh Marlis, I am so glad you are going to get home health care with all the physical and occupational therapists, bathing help, etc !!!! I have a feeling that Charlie might actually LIKE all the new attention he will be getting..........one never knows. Several times in our marriage we have had to have these same 'helps' for John, and it has been such a huge blessing !! Oh wow, and I will do it again if the need arises. I am also thinking that if you ever do consider a private nursing home, or even an assisted living place, you may well qualify for a grant. We recently received a grant for a new cancer drug for John......it was going to cost us $2,750 per month. We nearly fainted when we heard that. But, we applied for and received a grant that will give him that medication free for about four months, at which time they will re-assess us, and maybe renew the grant. Our Council on Aging here is a wonderful resource, and just looking thru what they have to offer might give you even more help and encouragement. They even offer free legal advice, and oh so much more. Be encouraged, Marlis. I pray you will find all the help you need and that Charlie will be pleased for it too !!
Hey you all. If your spouse is resistant for in home care, your local government Aging dept can provide cleaning care as well. My in-laws had someone come in 2x a week to clean house and do the laundry. Meals on Wheels helped as well when they got older and less able. They were able to stay at their home much longer. (My parents could not get Meals on Wheels because they lived outside of the city borders. My father was the caregiver and only had to cook breakfast on Saturday. Since my mom was complaining about her weight, he purchased Jenny Craig program and a AHA cookbook to learn to cook healthy for them both!).