Wednesday, September 23, 2015
Dementia is a disease of the brain. We all know this. But did you ever stop and think where all our loved ones are?
They are in our heart. This disease will effect me in ways I cannot even imagine in time. But it will never be able to change my heart.
That is where every loved one I have resides. When I am unable to communicate, unable to speak, unable to recognize my loved ones, and to tell them how much I love you, my heart knows.
When we tell someone we love them, many times you hear "I love you with all my heart."
You won't hear, "I will love you with all my mind."
I tell those who lose loved ones to this disease that when they lay in bed at night, and all is quiet, listen.
What you will hear is the beating of your heart. And this is where your loved one now resides. And they will until the day you are once again reunited.
Everything we do, it is because of our brain telling us to. However, we love each other with our hearts.
When you fall in love with that special someone, or you first see your child being born, it is your heart that allows you to love that person, that baby, that parent, or spouse.
It's not your brain. There will come a day when I no longer know those around me. There will come a time when I am not who I once was.
But there will never come a time when my heart changes the love I have for my family and friends.
Take me thoughts. Take my ability to make decisions. Take my memories. Take my ability to function.
But this disease will never take the love I have for my family, those around me and most importantly my God.
The heart don't lie. And it never forgets. So, take that dementia. You may be winning most battles, but in the end, I will win the war.
You cannot change my heart. And for that I am so thankful...
Sunday, September 20, 2015
We are a nation of medication. We take meds to sleep, meds to keep us awake. There are meds to lose weight, meds to gain weight.
One of the first things some doctors do with children who act out, is medicate them. Some of these situations, medications are needed.
Dementia is certainly one of them. As a patient, I can tell you that I could not function without the medication I am on.
One of the most important things you can do when it comes to this disease is to have complete confidence in the doctor who is caring for you or your loved one.
The idea that your love one is on whatever medication and things will be better, is simply not true. This is a constant battle of trying to get the right dose and the right medication to help your loved one with the symptoms this disease has.
We are very fortunate in having an extremely good doctor, who listens, and actually talks to us. He has been our doctor for decades, which helps and was instrumental in getting me into one of the most renowned Neurologists at Ohio State about four years ago.
Medications is a must when it comes to the dementia patient. And even then all the medications that your loved one is taking is only to try to lesson the symptoms of dementia.
There is nothing that will slow the progression, or reverse it, as some will tell you.
Everything I take is for the symptoms of dementia, not the disease itself.I take meds for depression, for anxiety, meds to help me sleep and so on.
Some people new to this disease have the misfortune of thinking that they can go their doctor and what is prescribed will indeed "fix" this. It won't.
Medications do indeed help, and in some cases the patient must be medically sedated for outbursts, being physically violent, or trying to hurt themselves or others.
Before dementia came into my life I was hard pressed to take a Tylenol for a headache. I am just not one to take pills. That was then, this is now.
So many times I read on Mp where the caregiver just decides for whatever reason to increase of decrease their loved ones meds because they feel that the medication isn't either working, or more would help.
There is not many things worse than messing with a patients medication, just because you can. If you feel that your love one should be on something different, or the dose should be increased, or whatever, please take this up with their doctor.
Messing with a persons medications prescribed be their doctor is not only dangerous, but can be deemed criminal in some cases.
The law is very clear on this. And common sense should tell you not to just take your loved one off of some medication unless of course their is some sort of allergic reaction.
Medications are indeed essential when it comes to dementia. I could not function without mine, and sometimes even with my meds, I cannot function.
I am often asked do I notice a difference. There is a huge difference when I forget to take my meds. I can tell within hours. I sometimes don't know that I have forgotten to take them, I just realize something isn't right.
Most anxiety and depression meds to time to work. And it can be a process of elimination of what will work, what dose, and how often to take it.
This is something that doesn't happen in just a day or two. It took several months to get my meds right. And even now, some of them have to be increased at times.
I will be on these the rest of my life. I cannot imagine what things would be like not taking the meds that I do. Yet, shockingly, some family members just take their loved ones off some meds because they don't think the medication is doing what they think the medication should.
Consult the patients doctor before doing anything with anyones medication. Unless you have M.D. after your name, you really don't have the credentials to make these decisions.
Friday, September 18, 2015
Peripheral vision. Everyone has it. Most have no idea or pay any attention to it. When you put your arms out to your side, and move your fingertips you should be able to see your fingertips move while you are looking straight ahead.
If you have dementia you pay attention to peripheral vision. Because slowly, but steadily you lose it.
You see for whatever reason ones peripheral vision becomes impaired the longer this disease goes on.
This is why you will hear people say, "Always approach a dementia patient from the side, not the rear".
We hear that, but did you ever wonder why? Well, it's on account of their peripheral vision. They no longer can see you approaching them from the rear and sometimes they cannot see you approaching them from the side either.
Why does this happen? Well, in a nut shell your peripheral vision is controlled by your brain, of course. Just like everything else and when you have a disease of the brain this too is effected.
There is many more issues with the loss of peripheral vision than just approaching a patient from the rear. Take eating for example. Or the lack there of.
You will read on Mp over and over about ones loved one not eating. They are feeding them, but they just refuse to eat. Most people think this has to do with them just refusing to eat.
It doesn't. Many times this has to do with the loss of their peripheral vision. In the later stages of this disease ones peripheral vision gets to where it's called binocular.
Meaning, it's like looking through binoculars. With that in mind, put your hands up to your eyes, form them as if you were looking through binoculars and see what you see.
Nothing, but what is directly in front of you. Now again with that in mind, think about when you are a staff member at a facility is feeding your loved one.
What to they see? They don't likely see that you are indeed feeding them. They most likely won't understand even if you tell them you are feeding them.
All they see is this fork coming at them at the very last second. They can't see the food on the plate, they can't see you are feeding them, what they see is something, a fork, or whatever they think it is heading right for their face.
This would enough to startle anyone. Yet, you never hear about this being a problem. Why is that? Because I feel the caregiver or staff doesn't realize about peripheral vision and the loss of it.
I am not saying your loved is not eating because they cannot see the food or the fact that you are feeding them. What I am saying is that this could very well be the reason they don't want to eat at times.
They are simply scared. They cannot see what is coming at them till the very last second.
Another issues you don't hear about when it comes to peripheral vision loss is depth perception.
The patient cannot tell when they are walking when the floor for example goes from carpet to tile. If there is just a pattern on the carpet or tile this too can confuse them as to where they are walking.
Which in turn can certainly attribute to falls. Peripheral vision can truly mess with your mind. And when your mind is already being messed with with this disease we call dementia you can begin to understand the struggles the patient has with just seeing what is going on around them.
As if you don't have enough on your plate to remember, I bring this up. But try to remember when your loved one isn't eating or they are startled from you just being in front of them it could be they cannot see you.
And that would scare anyone.
Thursday, September 17, 2015
One of the most frequent questions we get here on Mp is "How do I know when it's time to place my loved one?"
This is course is different for every patient, but it is also different for every caregiver.
My rule of thumb is and always has been that there is no down side to placing a loved one in a facility too soon.
There are many down sides to waiting too long, and none of them are good. The number of things that can potentially go wrong in waiting to long to place a loved one are endless.
I will go over a few. Medications. In a facility the meds are regulated and can be changed usually within the hour for whatever reason. When your loved one is at home, try getting them to the doctor to see them to evaluate them to change their meds. This in itself is a disaster and needed have to happen when you have placed them.
Mobility. Toward the end stage, there is none. Take a 70 year old spouse, weighing in at about 90lbs soaking wet, trying to get their 180b. husband to the bathroom, two, three times a night.
All this does it put both of them in danger of one falling, or both. And the end result could be a broken hip, which in some elderly people is in itself a death sentence.
Or just trying to bathe the patient. Get them moved from the bedroom to the couch, from the couch to the kitchen table, and back to the bathroom two or three times an hour.
Then there's the fear of them getting out of the house and you not knowing. Wandering. Wandering can and does happen in a facility, but the chances are a lot slimmer your loved one will wander there. And the response time when someone does wander is greatly increased because of the number of people there to look for them.
Stress. Anyone who cares for a loved one knows what I am talking about here. It doesn't matter if you are in your thirties, or in you seventies, the stress that this disease puts on a caregiver is the same.
The thing is chances are if you are in your thirties you are in reasonably good health. If you are in your seventies, you probably have several medical conditions of your own to contend with.
Long distance caregiving. This never works. How could it? There are families who have the help of others in the family there locally who cannot stay on top of what it takes to care for a dementia patient, and some try to do it from a couple of thousand miles away.
It doesn't work. It can't be done. If you are one of these who are doing this, you too know what I am talking about.
But, the most important reason to have a plan way before it comes time to even think about placement is because you said you would. What does that mean, "you said you would?"
That means that somewhere along the line you probably promised to take care of your parents, your spouse, your siblings, whoever. You may have said that you will never place them in a nursing home for any reason.
Well, never sometimes gets here before we know it. I am telling you this as a patient who knows his destiny. I know what is coming. In a year or two I may not, but right now I do and I do not want to put my wife nor our daughter through that. Period.
Then theres the fact that as a patient I deserve and demand to be taken care of to the best of ones ability. My daily care should not be substandard simply because of a promise you made some twenty or thirty years ago.
Chances are we all have made promises we haven't kept for one reason or another. This thing about "I promised my Mom I would never put her in a facility" is noble, but thats about it.
Dignity also plays a huge role in this. We all want to be cared for with dignity. Just because we may not be able to communicate or the patient has no idea what is going on around them, they deserve to have their dignity intact.
It tends to be pride thing also, believe it or not. One doesn't want their family to know they can no longer take care of their Dad, so they do the best they can, not even realizing that what care they are trying to give him is substandard at best.
Every patient deserves to be taken care of. That should never even be up for debate. But it is. Many times I read posts on here and the one thing you have to remember is that we are always just getting what information that the person giving it allows us to have.
When you couple the elderly trying to take care of their elderly spouse, or the daughter who is trying to care for her Dad and has a husband and three kids of her own an hour away, this soon becomes an ordeal that simply won't work.
In closing I want to tell you something and you need to think about this. Placing your loved one in a facility needn't be the dramatizing thing it is portrayed to be.
The nursing homes now a days are nothing like they were thirty years ago when you made that promise to never place them. Chances are the patient nor the caregiver have been in a facility that cares for dementia patients, ever.
Why is that? Because no one has a plan. Some think that one day they can decide they can no longer do this and just drive up to a facility with their loved one in the back seat and tell the nurse at the desk you have arrived and you can't do this anymore.
This only happens in row movies. The only person who can place your loved one is their doctor. You as their caregiver can and should know when it is time you can no longer do this, but it is only by doctors orders can a patient be placed in facility.
This has to do with all kinds of laws and insurance reasons, but all you need to remember is you just can't drive to a facility and announce you have arrived, get your loved one settled and that will be that.
First of all, these facilities are in business to make money. And there is only two ways they can do that. Private pay, or insurance. Now they don't care if it's either. but they do want their money and that is the bottom line.
It is imperative to have some sort of long term health insurance in place, preferably before the patient was even diagnosed way back when.
But this rarely happens. So you have to depend on what money your parents have and chances are you have no idea where or how much that is.
Try to run down insurance policies that were taken out forty years ago to see what is covered. All these things have a factor in your loved one being placed.
And, the biggest hurdle is does the facility you are looking at to place your loved one have the room? Again, you can't just drive up and think they have a room that has been waiting just for you to realize your loved one needs placed.
This post could be twice as long and I still would have just grazed the surface on why you have to have a plan when it comes to placement.
There are only two choices that every family member will face in time. You either place your loved one, or you don't.
This is what it comes down to. 90% of you will end up placing the patient, for some of the reasons I have mentioned. 10% will have the means and the money to have private care come and in and do what needs to be done.
The chances you will never place your loved one are slim. The promise that you made that you never will are just down right dumb.
This disease is bad in the beginning stages. I am not one to go by the "stages" of dementia. I feel someone sitting behind a desk somewhere came up with these stages and my guess is a patient wasn't even involved.
So the two stages I go by are the beginning stage and the end stage. We all know there is both of these. And most are not prepared for either.
Do yourself and your loved one a favor and be prepared. Placing a loved one to me is one of the most loving things you will ever do for them. You are doing something your heart tells you not to, but you are doing something that your mind knows is the right thing to do.
This is exactly what you said you would do all them years ago. Take care of them. And when you can't, yet seek out placement, you are in fact taking care of them.
We patients deserve to be taken care of. If our families would only have a plan, none of this would be an issue. But, as always, it is because of the lack of planning...
Saturday, September 12, 2015
An observation from an Alzheimer’s patient, me. This is how many dementia patients feel. Yet can't communicate it to anyone. Think about how horrible that is.
Having Early On-Set Alzheimer’s Disease I never realized how difficult it might be on occasion. I have no control like I used to, it has been stripped away and more control leaves me every day.
Yet I am blamed for this. I am told it is my fault. I am told to just relax, breathe and everything will be okay. It won't be okay, there is nothing about this disease that is okay. But it isn’t that simple. Why do people think it is so simple?
Funny, everyone else loses control over high stressed situations and it is all right, but when I do over the same situations it's different, yet the same. I just don’t understand why the rules are so different for me.
I hate laying blame, hate making excuses, but this is one time when it really is not my fault.
Alzheimer’s is an evil destructive beast that is hateful and vile and sits back and laughs while you cry and wonder why everyone is blaming you, yelling at you turning away from you.
Who more is to blame, the one who honestly cannot control it or the ones who can, but choose not to, who choose instead to blame and criticize the one who can’t?
There are situations where even the strongest can crumble, curl into a ball and cry and scream, so why get angry with a person whose self-control is being eaten away and slowly destroyed when they do the same, or less?
I don’t understand the rules you have made, why they seem to apply only to me and not to you.
Why can you get angry, scream and yell, throw a tantrum, but I cannot?
Why can you cry and I cannot? Why can you laugh out loud, make a scene, and I cannot? Why am I to live so different from you?
There will come a time when I will no longer be able to cry, scream, get angry, or show any emotion.
I will not be able to laugh with you, smile, or love you. Will you blame me then too?
© 2015 Rick Phelps
Thursday, September 10, 2015
Sleepless nights. We all have dealt with this. Caregivers especially. When their loved one is up for whatever reason they too have to be, because you never know what will happen.
I am blessed in a way, I do have many sleepless nights but I am still at a stage as to when I get up, at least Phyllis June can stay in bed.
I think we went to bed about 11:00 last night. It took me a long time to get to sleep and I was wide awake at 2:00.
When this happens it throws my entire day into a tail spin of course. From the time a patient wakes up till the time they indeed go back to sleep, their minds are racing.
It's just what happens. We become mentally drained because of this disease and add the lack of sleep into the mix then you have a real disaster waiting to happen.
I can only imagine what it is like to try to care for your loved one with three, four hours sleep daily and sometimes less. This becomes a bad situation for everyone.
The caregiver obviously is on thin ice from lack of sleep and even their decision making can be impaired at times because of this.
I will indeed lay down sometime today. But it sure puts a damper on what is already an impossible situation at times. With patients like I said we are constantly fighting with memory deficits and being mentally drained.
Add to that the lack of sleep and you have a real issue. I don't know which is worse, dealing with this or trying to explain to people that there is just nothing that can be done for this situation.
I take enough medication at times to drop a full grown elephant. I also take sleeping pills prescribed by my doctor. They don't work. Never have. Dealing with the lack of sleep is something I have dealt with for years now.
I remember my doctor telling me to get sleep whenever I can. It doesn't matter if its in the middle of the day or whenever. In other words, don't worry that your loved one seems to be sleeping too much.
My guess is they rarely get any good restful sleep at all, and if they do it's very rare. Like I said I have been battling this lack of sleep for as long as I can remember.
Which one would think would not be very long given my condition. One day there will be something that can be done for the sleepless nights patients have to deal with.
And, when that happens, that too will filter down to the caregiver getting more restful sleep as well. One day, there just isn't anything that can be done right now.
I have done everything to try to get a restful sleep. I have heard all the suggestions, and tried many things. All to no avail. I have even had some people suggest a a sleep clinic.
The problem is this issue stems from dementia. And it just isn't something that can be "fixed" in a sleep clinic for example.
The one thing I do know, there isn't anything on tv at two in the morning. Thank God for Mp....I read some posts that I have missed during the wee hours in the morning.
Friday, September 4, 2015
Can you go on with your life after your loved one is gone? This is a question that all of us face when a loved one passes.
It's a bit different for a dementia patient. I could not go on if God forbid something would happen to Phyllis June. Imagine the grief one goes through at the time of a love one passing, then try to imagine going through this as a patient. To put it bluntly you can't unless you are a patient.
When this happens the patient has to immediately rely on someone else. Who is that someone to be? We patients rely on our spouse, children, etc. to do so much for us that when the passing of a spouse happens before the passing of a patient, it would be devastating.
Take for instance finances. I haven't a clue who we owe, how much we, or what banks we make payments to. I haven't a clue when these payments are due, and even if I did I would never remember to make these payments. I have no idea when our water payment is due, when our Direct TV is due, or when we pay for the paper to be delivered.
I wouldn't have the foggiest idea of how to get things in order for the end of the year taxes to done, nor would I even know what is needed to begin to deal with such things.
Many of you will think if you lose a spouse, making payments is the last thing you would be worried about, that things like that doesn't matter at time like this. But, the bills keep coming, and have to be paid.
In most cases, this is simply an impossible task for a dementia patient to face. That and trying to deal with the realization that your spouse is gone is unimaginable to me.
I rely on my wife for everything. I haven't a clue how to get the tags on our vehicles renewed. I haven't a clue how to do a checkbook. I haven't a clue what taxes we owe, insurance, or anything of that nature.
Again, a lot of this most would not even think about, but trust me even after someone you love with all your heart passes, the rest of the world does not stop.
We talk about having a plan, then have another. How many of you have even thought of what would happen to your loved one who is suffering from dementia, if God forbid you were suddenly killed in a car wreck or suffered a massive heart attack?
We need to think about things like this and yes have some course of action. For us, if I die everything goes to Phyllis June, and vice versa if she would pass before me. Then our daughter is next if something would happen to the two of us together such as a car wreck.
But what about the daily needs of the dementia patient when their caregiver dies? What happens? Who's going to take over? Can the patient, like me stay alone?
I could stay by myself at this time. And that could last for several years yet, or as we know that could change in a moments notice. It isn't like our daughter would have to be here daily to check on me.
However, like I said, you have to have things in place financially. Someone has to know your financial situation, what you, who you owe it to and on and on.
We have enough life insurance and things in place if something happens all will be paid off, or at least most of it. But again, what happens then. I still need to pay the electric bill, the gas, the taxes, and on and on.
Know one wants to think about things like this. But it happens. Many times the caregiver passes before the patient. We all know this, we all have heard stories of some caregivers passing from stress related problems, heart attacks, etc.
But what you don't hear is what happens to the patient? Are they capable of staying alone? Some patients are. But would they be after going through such a traumatic incident as burying their spouse?
The problem now becomes, the patient or even the caregiver doesn't want anyone knowing their personal finances, or what they have. So even bringing this up can be a huge issue.
This is not the time for secrecy. But, many of our parents come from a proud and private generation to where it's just not any of your business how much money they have in the bank, what CD's they may have, who they owe, etc.
Adult children of a dementia patient need to be brought up to speed as to what the plan is if Mom who is healthy as a horse, and no sign of dementia suddenly drops over dead from a heart attack.
What do you do with Dad now? Where will he go? Can he possibly stay by himself? Would some sort of home heath nursing be appropriate? Would he allow this?
And all of these questions will arise before the funeral arrangements are even made for the caregiver who just passed.
Think about this. I know today is the day we all get ready for the weekend, and we have a holiday this Monday. The family will be together, what better time to discuss this then with all the family there?
It has to be done. This is one of those thing that you either do it now, or do it later under unbelievable stress. Take the time. At least bring it up. One day this could be the most important discussion you will look back and say you are so thankful you had with your family.
In closing, I want to wish all of you a very safe Labor Day weekend. Remember your loved one may not be able to tolerate all the chaos that goes along with family gatherings.
Try to keep the kids at an inside voice level while they are in the house.
Just be aware. How your loved one was once during Labor Day weekends is no longer the way they are now. You have to go into their world, they cannot function in yours anymore.
Have a safe and uneventful holiday.
© 2015 Rick Phelps
Wednesday, September 2, 2015
What is going on? Why is your loved one acting like they are? What can I do to help, or stop some of these outbursts? What am I to do?
We get many questions like this, and they are all very legit questions. We all want answers.
Every speaking engagement I have ever done have all in one very important way been the same, people come there for answers.
The story I tell, of our struggles since this disease came into our lives does make them think, which is the intent. But, way before my part of the program even begins, people, dozens and dozens of people stop us in the convention center, the hotel lobby, the restaurant, or when I am outside with Sam, to ask questions.
I found in doing these speaking engagements that most, not all, but most people just want to vent. They want to tell us what they are going through in hopes that they find out they are not the only ones living this nightmare.
The truth is, I don't have any answers for these people. And what happens is I listen. That's what they want. They want to tell their story. They want to let me know that they are trying their best, but its just not good enough.
Once I was doing a speaking engagement in Illinois I believe it was. We were standing in the hotel lobby talking with some friends and I seen a couple out of the corner of my eye that I knew wanted to talk to us.
We finished up our talk with our friends and were heading out for some dinner, when they stopped us and introduced themselves.
They had come from Las Vegas, NV. to be there for this conference and could not wait to here my story. They had came for a wedding as well but came a few days early to hear me speak. I asked them if they would like to sit down and talk for a bit, to which they were thrilled.
I won't go into detail about what we discussed. But we sat there and for close to two hours talking, listening, and just letting them vent.
The gentleman had dementia, early stage and what they were wanting is answers. Like everyone. This is so sad, the fact that ten out of ten families who have dementia come into their lives have not one idea of what lies ahead.
How do I know this? Because we were one of those families. I was diagnosed and sent on our way in all of seventeen minutes. That is the title of the first chapter of my book, "While I Still Can...". Seventeen Minutes.
It never ceases to amaze me how one can get a diagnosis of dementia, a disease to which there is no cure, a disease to which it is progressing, and there is nothing to slow the progression, and last but most important it is terminal.
There are many things that happen when one is diagnosed with dementia. Memory loss is the one everyone thinks about, but there is much more to this than just memory loss.
I often think if it was only memory loss, it would be much easier. This disease takes away your ability to reason, your ability to make decisions, you ability to have common sense.
What used to be things you would never give a second thought to are now things that you constantly struggle with. The things for example you used to be able to do.
Could be the simplest of things. Sewing, craft making, wood working, reading, going to a restaurant, getting you hair done, washing the car, going to church, or just carrying on a conversation.
All of these things, and tens of thousands of others we do without hesitation, we have done our entire lives, but suddenly, without notice these are all taken from you.
Is it any wonder one suffers from depression, anxiety, and stress with dementia? There is a whole host of things that go hand in hand with having dementia.
And the sad truth is, no one tells you this at the time of ones diagnosis. Most you will hear is "You have dementia, probably of the Alzheimer type."
The truth of the matter is there is not one doctor or one neurologists who knows what to tell you, so they tell you nothing. They know you don't know enough about dementia to ask at the time, so they are basically off the hook.
It appalls to know that these doctors know exactly what the patient is in for, yet say nothing. Why? Because what if they are wrong? They all are scared to death of being sued. And there is no way of being 100% sure of a dementia diagnosis without a autopsy of the brain.
So, they are vague. They don't tell you anything, unless you ask, and your not in the frame of mind to do that.
Every doctor who has ever diagnosed someone with dementia should be ashamed of themselves. Because I can tell you this, they don't give you any answers. They don't tell you what lies ahead.
This is where the fraud of dementia begins. From the time you or your love one is diagnosed it is one fraud after another. Unless you are fortunate enough to have a doctor who will tell you the truth, or fortunate enough to find us here at Memory People™.
We will tell you what we can. We don't sugar coat anything here. We tell you what you need to hear, not what you want to hear. You can be sure anything you see here on Mp is not conjecture or not something that someone just thinks up.
I started this site with that premise in mind. Why? Because I could find it no where else. Sure there are sites that profess to give out information about dementia, but they don't.
When you find a site that won't even use the real names of the people there, that to me is a problem. When you find a site that is for caregivers only, if that works for you than that is fine.
To me, you are only getting one side of the story. The caregivers. How can a caregiver get better at what they do, if they don't include a patient into the equation?
We have both here, and always will, because it works. So, in closing, know this...you cannot change what is coming. The very best you can do is have a plan, then have another. Deal with situations as they arise. What works today may not tomorrow.
Celebrate you victories and learn from you defeats. There will be many defeats.
If you can answer these three simple questions, questions that you will never hear from a doctor then you are doing the very best you can.The three questions are:
Are they safe?
Are the pain free?
Are they content?
If you can say yes to these three questions to a degree of certainty then you are doing the very best you can. Getting the person on the right meds for the symptoms is something else that one needs to know, but is seldom told.
I could go on and on about what is not told to you from a doctor. But you have to get educated about dementia. You have to understand the disease before you can hope to help your loved one.
Sadly, too many times, know one is told what to expect, let alone what to do. Everything I post here on Mp is indeed the way a dementia patient is. How do I know this? Because I too live this every single day.
I am but one patient, but when I speak of what I go through, you can rest assured it is not something I have read somewhere. It is something that I deal with, and share with you in hopes it may help you be a better caregiver, or at least give you a glimpse into the mind of a dementia patient.
© 2015 Rick Phelps
Tuesday, September 1, 2015
Money. Another great struggle you must deal with when it comes to dementia. But one that unless you are dealing with it, you will never understand.
I am talking about the lack there of. It just pains me when I see an article of say Glenn Campbell and how they are dealing with his dementia.
Or, Seth Rogan, with his Mother in Law. These people all mean well, but let me let you in on a little secret. One that is unspoken of in the world of Alzheimer, or any other dementia for that matter. The poster boys for dementia that are picked year after year will never know this disease like we do.
These people will never know what it is like to care for a dementia patient like any of us do here. And I am very happy that they won't. Having made it in the music business or movie industry, there is little that they do that mirrors what goes on in the real world.
When I was working, my wife and I both had two jobs. I grew up very poor, so I made up my mind very early that I was going to work hard and have the things that I wanted.
That all changed when dementia came into our lives. I know longer have motorcycle after motorcycle, or just buy things cause I can. To me at first this was very difficult.
But when you are dealing with money issues, the lack of, everything changes. Your priorities change. And so does your income. And that is what some of these prominent people will never have to deal with, no matter what you read or see on tv.
Again, I applaud these people for making it. Some have made millions in their lives and deserve it. But when it comes to not knowing how you are going to pay for your loved medication is not something that these people have to deal with.
Not being able to afford the insurance that will help you pay for the medication is another hurdle. Just having money to get buy, is at times a struggle.
I have said for years, unless you are unusually wealthy, you don't have enough money when it comes to the care and financial burden dementia puts on you.
Yet, there are some in the media that want you to think from their sixty second commercials to their sixty minute specials to their documentaries that they are just like you.
Their not. Remember that. Again, I am glad they have achieved the American Dream, but don't tell me the Campbell's or the Rogan's or the Pat Summit's of the world know this disease like the rest of us.
If you think you had money issues before this disease, you wait. This will put a hardship on you like no other. The meds alone can bankrupt a person. Let alone not being able to afford some sort of home health care.
You place your loved one it will most likely be in a semi-private room in a facility. Not to many insurance companies cover private rooms as a coverage.
This again is something the elite will never have to deal with, semi-priate rooms. I can name you a half a dozen or more families in the music industry alone that have made tens of millions of dollars.
Much more that they would need to have 24hr/7day a week foe in home nursing care for them, yet they are in a facility. That too is one of the dirty little secrets.
What any of us would give to have the choice to care for your loved one in their own home, but can't at a certain stage of this disease. Some of these well known people have houses that have six, or eight bedrooms.
You would have to go out of your way just to see the other person, yet their loved one is placed. This is their business. And far be it for me to say when someone like Lizza Gibbons for example talks about her Mother and her disease, yet she is in a facility.
I just want you to know, that all is not how it seems especially when it comes to stardom and dementia. They don't know dementia like we do, and they don't deal with the money issues that accompany this disease.
When is the last time you went our for a nice dinner in a nice restaurant? Better yet, when was the last time you got to sit down, have a cup of coffee without worrying about something that comes with dementia?
It consumes you. And it will break you financially. Not all, but most. It has impacted us tremulously. There is no savings, there is no vacation money, though we don't do vacations and haven't for years.
This is no normalcy. And the issue with money just adds to the pressure of being a caregiver. That is the truth...
© 2015 Rick Phelps