Dementia robs people of so much….their memories,their lives and relationships. Some days it is difficult to sit behind my desk and talk with loved ones about the progression of the disease process. I listen to their words, but can clearly see the heart that has been broken……The question everyone asks is,” how will I know when it’s time?” I always have to and ask for clarification …”when what?” This is where things become very sticky…..
” When do know when it’s time; I mean how long can a person live with dementia? When do they stop swallowing? I read that dementia causes people to forget how to eat and I guess they forget to swallow? Is that true? If it is, when do you decide to put a feeding tube in? How long can a person live if they don’t eat? I guess what I am asking is, when is when?”
Such loaded questions. How does anyone really know how to answer? We can recite the scientific data that we know, explain the process of death and dying and lecture for hours on dementia….but to answer when is when? When does one decide to stop treating with antibiotics, IV fluids and or place a feeding tube? One person defined the choice by saying ” It is a matter of quantity vs quality. ” In some ways, I agree with the statement, but every situation is unique to itself. I do not think we should define ” quality of life” based on a disease process. Some dementia patients have the best time in the state of mind they are in. They laugh, sing, dance, and are content with the world dementia has created. I have also seen a 103 year old woman perform the ” jitterbug” on the dance floor! So, I do not think we can define life by ” quantity vs quality.”
What I do think helps to determine ” when is when” could be the individuals physical state…I would not propose placing a feeding tube or prolonging life in a person who is feeble, fragile and failing. It is not about their age, diagnosis or mental sharpness but rather, about the whole person and the state of their body. Modern technology and advances in the medical field has allowed us to ” live forever” with mechanical machines, devices and gadgets. Ventilators, life support machines and other devices can keep any of us alive…..but where is the defining line to unplug them and allow nature to take its natural course? In these situations we wait for a medical doctor to walk in and say ” this person is brain-dead and is only alive because of the machines.” At that moment, all hope is gone, lost and it’s over. That is the true determining factor….all hope is gone.
If only it were as simple with dementia. We do not know what the patient can and does understand, nor do we know what their awareness of themselves or others really is either. Hence the quandary.
The best advice I can give anyone is simply to always follow your heart and let the decisions made reflect what your heart feels. Dementia has robbed so much from the victim’s family; the last thing needed is to feel guilty about the decisions made at the end of life.
I have a family member that tells me weekly how much money he has in the bank and how many months he can afford to continue paying for his wife’s care. His question to me is, “What if my wife out-lives the money?” I explain the Medicaid system and other state and federal assistance programs to him to which he offers another problem .
” You see Jessi, I can’t get public assistance because I still have money in CDs, IRA’s and a few stocks. I won’t qualify for help from the agencies. You see, I can’t spend every dime I have on Bessie because I still have to live after she is gone. I’m not talking a lot of money, maybe a little over $100,000 dollars, but too much to get Medicaid. I’m only 73 and I am hoping I have set aside enough for myself. Before Bessie got dementia, we have over $300,000. Now we barely have a little over $130,000. See my problem ? “
Hmmm. I do see the problem, but I do not know the answer or how to solve it. My standard answer is simply, “Let’s just take one day at a time and cross each bridge as we come to the crossing.” I know such a loose comment offers no comfort, but I really don’t know what else to say. Should I encourage him to continue spending what money he has so he will qualify for financial assistance ? Should I encourage him to take his wife home so he can save money, knowing he is not able to provide the constant care she needs ? Should I offer to have hospice evaluate his wife, or place her on palliative care which would decrease medical bills, aggressive treatments and eliminate costly medications? I just don’t know.
There are so many factors to the loaded question as to “when is when”. Maybe the best answer is……”Let’s cross each bridge as we come to the crossing……..or maybe “Let’s go through the tunnel when we come to it”….at least there is hope in the light at the end of the tunnel.