The Hardest Part Is Knowing...

  I think the hardest part of this disease is realizing you have it. Knowing a bit of you is being lost every day.

 Knowing one day, just not what day, but one day you will not recognize your family. The people in your lives, the caregivers if you will, struggle with this daily also.


I overheard our nieces talking over the weekend, asking each other if I was alright, if I had done or said anything I shouldn't have.


Knowing that these two have to ask questions like this just breaks my heart. They see their Uncle Ricky slipping away. I was unable to do the things I used to do with them at the water park.


I watched them, thinking to myself that I always hated to see parents not interacting with their kids at events like this. And now, I was or have become the very thing I hated.


It's the disease, it's always the disease. But just being there with them was enough for them. I know that. They wanted me to go down the super slides with them, as we have always done in the past.
But with this disease, it would never allow me to stand in line, in close quarters with hundreds of people. Even with my dementia service dog, Sam, there are limits, things I just won't do to bring unnecessary stress upon myself.


The Uncle Ricky they once knew, who could do all these things and much more, is no longer here. I do the best I can with them. And that is enough for them.


But I see it in their eyes. I hear the whispers to Aunt and Grandma Phyllis, "Why won't he get in the water?" She just says, "He can't girls..."


This and much, much more is what this horrible disease takes from you. I posted that the weekend went fine. And in a sense it did. I was not stressed, no anxiety, or fear.


But, one must know that the person I was, I am no more. It's hard for adults to realize this, let alone kids...


I wanted to post this so everyone knows and remembers that what once was, the person your Mom, Dad, or whoever it is, is no longer. What they once loved to do could now scare them to death. What they once loved to eat, they may now hate the very smell of it.


It's the disease that does this to us. I'ts always the disease. When I say or do something I would not have done in the past, I find that I don't catch it anymore. I am slipping. We all are who fight this disease.


It is without a doubt the hardest thing anyone will deal with, regardless of whether you are a patient or family member.

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How to Convince Your Parent to Move to Assisted Living

Conventional wisdom says that we all want to stay in our own homes for as long as we can. That is likely how most of our elders feel; however it's not always in their best interest to do so. How do we talk with them about the realities and dangers of staying at home once their health is failing, and how do we convince them that a move to an assisted living center could be a very good – and positive option?  I believe that part of the problem with convincing elders, and many younger people for that matter, is that people haven't been inside a modern assisted living center. Deep inside their gut, they harbor the outdated image of an "old folk's home." They consider a move from the family home one more step away from independence and one step closer toward death. They think a move to assisted living signifies to the world that they now have the proverbial "one foot on a banana peel and one foot in the grave." This image and mindset is stubborn.  For many elders, some in-home help and a personal alarm can be enough. They are able to stay in their own home for years with a relatively small amount of help. Then, a spouse dies. The survivor is now truly alone. There's no one to get help for them should they fall and can't set off their alarm. There are few opportunities to socialize. Meals become a chore, so they don't eat well. Memory is failing, and the stove doesn't get turned off. The single elder, stubbornly clinging to the idea that their familiar home is best, can often be a sad and lonely sight. Contrast this life with living in a good assisted living center, whether it's a stand-alone building, one connected to a nursing home or a small family operation where only a few seniors board. In any of these situations, seniors can thrive because: They don't have the responsibility of keeping up a home, so they are relieved of the need to hire help or let the house deteriorate. They have people around should they need medical help or other assistance. They have choices of food and snacks with nutritional value and, in most cases, good quality. Perhaps most importantly, they make new friends and have an abundance of activities to choose from.  Okay, you are convinced. You know that you can't keep providing the constant oversight for your parent that has been taking over your life, and by extension, taking over the lives of your spouse and children. How do you go about convincing your parent that it's time think about moving to assisted living?

1. First, plant the seed. Don't approach your parent as though you've already made the decision for him or her. Just mention that there are options that could make life easier and more fun.
   
2. Next, offer a tour of some local assisted living centers, if he or she is willing, but don't push it. Drop the subject if necessary, and wait for another day.
   
3. Watch for a "teachable moment." Did Mom fall, but escape getting badly hurt? Use that as a springboard. You may want to wait a bit, or immediately say something like, "Wow, that was close. Once you're feeling better, maybe we could go look at the new assisted living center over by the church. We'd both feel better if you had people around." Go with your gut on the timing, but use the "moment."
   
4. Again, don't push unless you consider this an emergency. It's hard to wait, but you may need to. Wait for, say, a very lonely day when Mom is complaining about how she never sees her friends anymore. Then, gently, try again.
   
5. Check with your friends and friends of your parents. See if any live happily in an assisted living center nearby, or if their parents do. Just like your first day of school when you looked for a friend – any friend – who may be in your class, your parent would feel much better if there were a friend already in the center.
   
6. Even if they won't know anyone, you can still take your parent to watch a group having fun playing cards or wii bowling. Show off the social aspects of a good center. Keep it light and don't force the issue. Tour more than one center, if possible, and ask your parent for input. Big center or small? New and modern or older and cozy?
   
7. Show interest in how much privacy a resident has. Ask about bringing furniture from home and how much room there is. Take measuring tapes and visualize, if you can see some rooms, how your parent's room(s) would look. Show excitement, as you would do if you were helping your parent move to a new apartment, because that's what you are doing.
   
8. Stress the safety aspects.
   
9. Stress the fact that there's no yard cleanup, but flowers can be tended to. There's no need to call a plumber if the sink breaks, but there are plenty of things to do if people want. There's plenty of freedom to be alone, but company when they desire it.

Then wait. Let it all sink in. Sorry to say that if you want your parent to make the decision, you could have to wait for another fall or something else before they will be willing to take that step. However, if your family is close-knit, have a meeting with the parent at this point and tell him or her how much better the family would feel if the move were made.

Enlist a family friend or spiritual leader to chat with your parent and state the case for this move. Third parties often can make headway when family fails.

Be sensitive to your parent's feelings. Leaving a home where he or she lived with a life partner, raised kids and once had friends among the neighbors is emotionally difficult. Whittling down a lifetime of possessions is hard. Be kind, be sensitive and try to make it be about your parent and not about you.

However, if you must – let your parent know that it will help you to know that he or she is safe. Play the "we are worried about your care." It's the truth. It's just easier if you can swing it, to let the parent make the decision.

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Should Mom Be Living Alone?

Recently I received a call from Michelle, an exasperated adult daughter asking if there was any legal way to get her elderly father to stop verbally abusing her and to accept a caregiver so she could move out of his house. She had moved in to help him after her mom passed, but was now trapped as he refused to move to assisted living or accept live-in help.  Michelle started to cry, saying she had just called an agency where a man "laughed at me," saying her father could do whatever he wished in his own home short of physically abusing her. Since I have survived the same situation with my own father, I knew the misery she was going through.

 It reminded me of a call I received from another adult child, Paul, begging for my advice on the same situation. He was at the hospital with his parents. His elderly father had accidentally burned the house down. He'd tried for years to convince them to move to assisted living or accept a caregiver, and a couple times even had everything lined up, but they'd cancel at the last minute. I felt so bad for him and suggested it might be best to wait until his parents recovered from the smoke inhalation before trying again. But Paul (a successful 60-year old businessman) burst into tears with, "I can't wait! My father already hired the contractor to rebuild the house. Jacqueline, my parents are 90 and 92!"I wish I had the iron-clad solution to this problem to help so many people. Since our civil rights are (fortunately) very strong in the United States, unless an individual is legally proven incompetent (a difficult process, but especially hard at the beginning stages of dementia), they cannot be forced to do/not do anything against their will – unless, of course, it's something illegal.  The best way to increase the odds of a parent accepting help later in life is by starting end-of-life conversations early, and long before health and rational thinking start to deteriorate. When a parent's "Third Act" wishes have been discussed openly for years (and documented with living wills, trusts, durable powers of attorney for Health and Financial, etc.), when the time comes, the transition is less traumatic.  The problem is that so many people never get up the nerve to broach such a sensitive subject, or every time they try, the parent gets mad, goes into denial, makes silly "senior moment" jokes, and nothing ever gets resolved. If this sounds like your situation and you've been procrastinating and avoiding "The Conversation," realize that when your parent does reach the crisis point and you have to step in, you have a lot of "convincing time" ahead of you.

Will Your Elderly Parents Be Safe Living Alone?Take a moment and remember when you were the child. Wouldn't your parent have done everything in their power to keep you safe, no matter how much you protested? Now, as hard as it is, you have to accept the role reversal and be the responsible "parent" who persists in making sure your parent is safe. And yes, even for those who have not been great parents, do the right thing and plan for good karma!   When you know in your heart that your parent cannot remain safely in their home any longer, don't let demands and pleas cloud your better judgment. You know what they need, so don't end up a sad statistic by waiting for the heart-breaking middle-of-the-night crisis call about a broken hip, medicine overdose, stroke, or horrific car accident where they have been hurt or even killed, or some poor innocent family has been--and a lawsuit is certain.  Reach for Support ASAPBe sure to ask all the relatives, friends, clergy, healthcare professionals/ doctors to back up your specific plans by calling or coming in-person to see your parent to add words of encouragement and support. You might even ask everyone to visit at the same time to help with an intervention of sorts, where hopefully your parent finally understands the seriousness of the situation and "sees the light."
Finally, realize that nearly everyone who has ever lived since the beginning of time, who has been lucky enough to have their elders reach old age, has experienced the pain of watching their once-competent parents decline, need help, and pass away. We all intellectually know it is a sad part of life, but even with all that's been written and with all we have seen, there's nothing that prepares us for the sorrow when it is our loved one. Take advice from all who have gone before you--don't even consider going through it alone.

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Dementia Signage for the Home