Old Age Is Not For Cowards

I know many people have written off Facebook for a variety of reasons. But I have to tell you, the groups function on Facebook has proven to be a super valuable tool for crowd sourcing answers to my questions and learning things specific to topics I am interested in. While this applies to things as simple as travel pages and hobbies, it applies much more importantly to medical topics.

My husband has a feeding tube (Peg tube) and probably has Multiple System Atrophy which is a lesser known sister disease of Parkinson’s. I belong to Facebook groups on both of these topics and I have been blown away by the information exchange that goes on within these groups and how much I have learned. Both feeding tubes and MSA seem to be topics “normal” doctors know little about. Therefore, I, as my husband’s caretaker have become his nurse and doctor when medical issues arise regarding either of these topics.

My husband was experiencing an issue with his feeding tube. I posted a question about it and got tons of answers. By trying the advice we were given we realized he had a more serious issue than what I had posted about. We never got this information from his primary or gastro doctor since he had it installed 6 months ago. Thanks to fellow members of this group we now have identified and successfully treated the more serious issue.

On the MSA page I also posted a question. The person who answered had “moderator” and “expert” next to her name. I asked her how/why she had those titles. I found out her husband had died from MSA but she had got so involved with the cause that she has run support groups and even managed the MSA Coalition annual conference each year which doctors from around the world attend and speak at. This woman is a walking encyclopedia on this disease and she answers many of the questions posted on the page. From this page we found out my husband’s primary care had prescribed medicine for him that was actually dangerous for patients with Parkinson’s!!!

My sister has a rare genetic disease. There is a page for that on Facebook. My ex-husband has a rare eye disease. There is a page for that on Facebook. My son has Autism and there are LOTS of pages about that. If there is a medical condition out there I believe at this point there is probably at least one if not many pages about each condition. It is crowd sourcing at it’s best! So even if you aren’t a Facebook fan, set up an account, turn off all the social media aspects but sign up for groups!

The other benefit of these groups is not only practical support and knowledge but emotional support. It makes you realize you are not the only one experiencing these issues. It gives you new friends to talk to who know what you are going through. Handling the curveballs that old age can throw you and conditions that cause you or your loved one to be very ill and possible die is SO much easier when you know you are not alone!

I diagnosed my husband’s MSA and throat cancer using Google! Google can be bad because you are not an MD and may not understand everything you read. It may cause unnecessary panic when you look up your symptoms. But be thorough. Check the resources you use. If you consistently come up with the same information from many different sources, likelihood is your findings are correct. Only you know your body or a loved one’s body intimately. Doctors do NOT know everything! If you know something is wrong then assert yourself and if the doctor is not listening to you go to another one. And do not write off Google. It is a valuable resource if used correctly.

And finally, don’t forget You Tube. You can also find a You Tube video on any topic you are interested in. You can learn to do anything on You Tube. You can watch conferences on any topic you want more info on. Use You Tube!

So let me end by saying, don’t hate cookies! If you search for a cookie recipe all of a sudden you will start seeing cookie ads on your PC. You may find that irritating. But the benefit is when you google medical conditions, medical organizations find you. You get ads for programs you did not know existed. You might get contacted for a medical trial. You might get an ad for a product you actually need! Do no hate cookies!

This digital world we are all now living with may have it’s evils but it also has good. Do not write it off. Use it for it’s good. Use it for it’s information. Use it to connect with like minded people. And have some cookies while you are at it!

It’s bad enough that dying has been a topic on my mind this past year due to my own age and my husband’s health, but to add to those thoughts my dog is dying. I almost feel like God has planned this to give me a microcosm of death to think about before it is a human death I have to deal with. He is a 17 year old Dachshund who is almost totally blind and deaf at this point. He has lost most of his teeth and has horrible cataracts. His quality of life is pretty low. He still walks and eats and drinks however so what defines “quality of life’” for a dog?

He does not like being pet very much anymore. I think it’s because of not being able to see, but who knows. It just seems like being pet spooks him now. But even though he can barely hear he knows when I am in the kitchen and stumbles his way there in hopes of being fed. So he still enjoys eating apparently! And even though he cannot see he “follows” us and sleeps nearby wherever we are. He knows how to find us — scent maybe?

We cannot go away hardly at all due to him. He takes meds and has special needs that I would hate to put on any other caretaker. He cannot go to someone else’s house or a kennel because the unfamiliar environment would certainly cause him extreme anxiety because of his eyesight issue. We cannot even move a piece of furniture without it causing him severe stress.

So, we are waiting for him to die. Of course I could “put him down” at anytime. But he is a member of the family and life without him will not seem the same. 17 years is a long time to “live” with someone.

But, my husband, whose health is failing due to a degenerative disease, also does not have a lot of time left to enjoy life. So by not putting our dog down am I sacrificing good times with my husband? We are bound to our home pretty much as long as this dog is still living. Am I choosing my dog over my husband by not putting him down? It is important to note that my husband is willing to put him down because he feels his quality of life is so low. I am the one nursing our dog and keeping him alive.

If I can’t decide when to end the life of a pet, how will I know when to end my own life or allow my husband to end his? Is keeping a very sick pet or person alive because you don’t want them to leave this earth a selfish act?

So, I take the easy solution by telling myself God will take him our dog when it is time. Is this approach putting unnecessary suffering on our dog? It is legal to make a choice to put your pet down but in most states it is not legal to “put a human down” even if they are suffering.

I once told my very philosophical son about my desire to end my life before I am a burden on any of my children. He said, “You are going to deprive us of spending that end stage of life with you?” I never thought about it as being a privilege for the ones left behind but dealing with this decision about my dog, I can see how there might be some validity to that statement. I always say that a fast death is easy on the one who dies but hard on the one who lives. A slow death at least gives the living person time to process, prepare, and hopefully have closure. So is taking your life prematurely a selfish act also?

So there you have it. The thoughts that swim in my head everyday! I am not prepared to put my dog down yet. I do want to take my husband on a bucket list trip a year from now. We would have to put the dog down to do this unless we can find someone who would happily stay in our house and take care of this elderly dog. So stay tuned to see what I do or what God does. I pray it becomes evident what the best answer is, but for now I am just waiting for him to die and taking as good a care of him as I can.

In the meantime by dog is teaching me about death and life situations before I have to make them on the human level. I am thankful for the thoughts he provokes in me as I sort these issues out. He may be dying but he knows he is loved and he trusts me to take good care of him. It is such a heavy responsibility to be in charge of a life — any life. My prayer is, “God give me wisdom and peace as I make these decisions everyday.” I hand it to Him on a daily basis and that’s how I sleep at night!

I told you I was an optimist and from this title you probably think I was lying, but I am not. Just because I am optimistic does not mean I don’t force myself to face the most negative of thoughts. The control freak side of me has to do this to be prepared for the worst. I have to allow my mind to go to the worst thoughts, no matter how scary, to give myself time to ruminate and analyze how I would handle the situations should they come to pass. That way I will at least be somewhat prepared.

Once you hit the age of 60, everyone should starting thinking about death and dying and become prepared for it because for some of us it will happen fast and some it will happen slow but we ALL are going to die. The question is how are we going to handle life when our health starts to degenerate and how do our loved ones want us to handle it for them.

I read a Facebook post from a woman whose husband has a neurodegenerative disease that has no cure or even treatment and he will die from it. He is very ill. She was totally lost as to what to do and how to take care of him or herself. She was emotionally and physically exhausted from taking care of him already. She was asking for advice. (Which I applaud and is a topic in one of my future blogs.) My husband also has a neurodegenerative disease. We don’t know the specific diagnosis yet but he most likely will have a long, not pleasant death. Right now my husband can still walk and talk and do things for himself but one day he probably won’t be able to do any of that. I am forcing myself to become prepared for that time.

When I read that woman’s post I felt so sad for her. Not only for the obvious reason that her husband is dying but for the fact that she obviously is totally unprepared for this situation. I do not want to be this woman. I will make my husband have conversations with me about this situation before it happens. I cannot martyr myself like this woman, and so many others on Facebook groups about terminal illnesses do everyday for their significant other. And when this husband was healthy I am sure he would not have wanted his wife going through this either.

My friend, the hospice nurse, tells me she often has seen the caretakers die before the sick one because they exhaust themselves and do not take care of their own health. This does not make any sense to me but I read about women whose shoulders and backs have gone out again and again lifting their spouse in and out of wheelchairs. And I force myself to think about whether I could be that kind of caretaker. I can tell you right now the answer is no. But if I am not prepared for how I can handle this situation, then I could see it happening without you even realizing it. Of course you love your loved one and don’t want them to feel rejected. But what good are you to that loved one if you die before them or end up in the hospital while they are at home alone?

My husband is a veteran. He has never taken advantage of benefits he could have already but I am starting to learn about those benefits myself. I found out he can apply for care under the Pact act because he was in Vietnam. I am going to apply now because I imagine, like other government services, it will take a while to process. My hospice friend told me about palliative care available from hospice for up to a year before true hospice care is needed. I am sharing that information with this woman on line. People do not even know services that are out there to help them so they don’t have to be the only caretaker of a very sick person!

This woman says her husband does not want to go to an assisted living facility or even have a feeding tube. Does he really have the right or the sound mind to make these choices? My husband has already given me power of attorney so, if need be, I can make decisions for him. I would think this is a good thing for everyone over 60 to think about. Is there someone else in your life who you’d trust to make decisions for you when you no longer are thinking clearly?

There is a document called the Five Wishes (google it). I urge everyone to fill it out with a loved one so there are no family arguments when decisions have to be made regarding your care. Do it so no horrible decision someone has to made about whether or if to extend your life. Think about what a stress this will cause someone or many who love you. If you fill out this document while you are still healthy and of sound mind, you will be make it so much easier for your loved ones to make decisions on your behalf.

Of course, your loved ones may not want to have these difficult conversations. But I implore you to have them before you are in crisis mode. Have them in small pieces. One topic at a time. But have them! Have a will. Have an end of life plan. Have a health care proxy. Find out what services are available and the costs of those services before you need them.

In my first blog I discussed how I am determined to control the way I die. Have those same discussions with your loved ones who are older than 60. If they don’t want to go into an assisted living facility or nursing home then discuss with them the alternatives. Would they like medically assisted suicide to be an option? Would they really prefer to be deprived of food and water if they are terminal to hasten their death? These are horrible topics to discuss but oh so necessary to prevent everyone involved from being traumatized anymore than they have to.

Also, know how your loved one handles his finances. Do you know the passwords to their accounts? Are you listed on the bank accounts so you can have immediate access to them? Doing these things and finding this information when your loved one can no longer speak, or sign a document is SO much more difficult than preparing for those things while they are well. Again, it’s not a pleasant topic to discuss, but force yourself and your loved one to have these discussions and take action

Prepare for the worst and should your loved one be fortunate enough to have a quick, painless death, then no harm has been done. But if they have to go through the many stages of dying like so many people have to, then be prepared for the worst. Don’t be this woman asking for help when she is totally depleted of all physical and emotional energy.

Although if you do need help, in my next post we will discuss ways to find it!