The (not so) Hidden Costs of Caregiving

Your response was exactly what I thought when I read it. And there are anymore. And the "easy?" about government sources is a misnomer. It is very difficult and time consuming and then when you finally get it, they constantly want you to complete another report or withdraw it with no communication at all. VA is very bad about this with their pension department. I really thought the medical help was excellent in our area (Iowa) but the Pension department in Minneapolis never responds or sends a letter that is dated a month earlier and the "deadline is tomorrow."

Spot on, @rmftucker I cannot count all the hours and hours and hours and hours and.... (you get the idea) I had to spend, I'd say waste, fighting denials of insurance, arguing with pharmacists who disagreed with my wife's physician over her care and medication regimens, and writing letters asking for a reviews of the insurance company's decisions!

It took me awhile before I finally came to peace with the fact 99% of my insurance submissions would be denied the first time around!

According to one of my husband's physicians, you need to include specific words for a request to be approved. If these words aren't there an application is trashed. This means you need to know someone who knows the words, a challenge in itself.

So what are the right words to use?

I don't know because they vary with the condition. All I know is that a member of John's health care team said she was going to include all the right words in her letter to Medicare so he couldn't be turned down. Also, it's common for requests for electric wheelchairs to be denied the first time around.

Thank You
This is 100% a true fact. Others in our lives have no idea of the cost of care-giving and the life we have been forced to give up and would not care if they did. My husband; in my case thinks funds are endless and his answer to all of his financial needs: I have investments! He cannot perceive the absolute necessity of very wise and controlled spending. He lives in a care facility and was diagnosed with bvFTD in 2017; an impossible and cruel disease to manage. I am not sure where I am suppose to get the funds to sustain my own needs and enjoy my life.

Scott,
I’ve followed you since my husband was diagnosed with dementia in 2011 and have been amazed by your dedication and kindness to our community of caregivers. I imagine there will be a special place in heaven for you sponsored by all the people you have helped and given aid and comfort to. I wrote earlier this morning on the difficulty I was having finding a care facility for my husband of almost 50 years. I don’t have to say what a heart-breaking and gut-wrenching feeling this is. My question is has anyone heard of Senior Services of America and what can you tell me about the quality of their care. I’m particularly interested in The Lodge at Mallard’s Landing in Gig Harbor Washington. Can anyone help??
Talie

Hi @momkids, welcome to Connect. Behavioural variant of frontotemporal dementia (bvFTD) certainly is an "impossible and cruel disease to manage." How do you protect yourself from your husband's assumptions that you have endless funds? I assume he doesn't deliver his thoughts kindly.

My journey is so long and painful. Because my husband lives in a care facility I have the option to walk away from unhealthy conversations which is what I do. I had to learn how to converse with him to avoid his "bvFTD" rudeness which is simply taking the conversation in a more positive direction, which does not necessarily work. With his continued declined he has had a personality change and he is more pleasant these days. I'm thankful for that!

You have been at this for some time now, how are you holding up? I am glad you have found ways to deal with conversations. I am also glad you found a care facility you are comfortable with. My heart goes with you today.