Taking Care of A Family Member With Alzheimer's

in #alzheimers7 years ago

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This is for all of you who are thinking about or considering caring for a family member with Alzheimer's. There is no medical advise here.

This is not an easy task and you should know a few things before you give up a large portion of you time; possibly years. This is an attempt to inform of the realities, pitfalls and few rewards that are involved with such an endeavor. I'm just going to tell you my experience of taking care of my mother for roughly six years and you can take from it what you will. I hope it will answer a few questions you may have about taking care of someone with Alzheimer's.

If I can help - I will. Just shoot me a comment and I'll do my best to answer any questions you have.

As you can see I have declined payout on this as it's not about me — it's about you guys and to hopefully help even just one person out there through a tough time or prevent more hardship than necessary. The money is nice but, to me, this is what Steemit is really about — a chance to be heard and maybe help a little.

Here We Go

First and foremost: If you do this, your way of life will change. I don't care if you're rich and can provide attendants and the like. Minimally, your life will change emotionally. Unless you're a cold-hearted person, you will be effected watching a loved-one slowly disappear, mentally then physically, before your eyes on a daily basis. This is the reality of it. It is truly sad, but it is life.

I want to start out with a credit to my daughter who came up with a very apt description when she came to help for a while. I'm paraphrasing here: "You know, when you explained all the things about what is going on with taking care of grandma, I understood intellectually, but after experiencing it for myself, I get it now. It really gets to you after a while."

The Call

In 2007 I got the call from my brother. There's three of us and I'm the youngest. The brother on the phone is the oldest. He would call me with updates from time to time about our mother. She was diagnosed with Alzheimer's a few years earlier and, after my father passed away in 2001, she was on her own. Around 2005 my brothers and I agreed my mother should have a caretaker come three times a week to do the cooking and laundry and keep an eye on her in general.

The news was not good. He said that her caretaker was worried for her as she was getting worse. A decision needed to be made about this situation. There were only three possibly viable options - 1. sell her house and put her in a nursing home. 2. Have her move in with my brother and he would try to manage her and still work a full time job. 3. I would move there and take care of her.

The first was not workable as she has had Alzheimer's since the late 90's and it was a very slow progression. She was getting worse but she most likely run out of money before her passing and we would be back to square one. I think no one wants to put their mother in a state institution. And this was not going to be the situation with us. I promised my father she would be taken care of and this is what I intended to do.

The second was not feasible either as she is requiring constant care and my brother had a full time job and could not do both. The third was the only option as far as logic went. I had a business I ran from my home and could easily move it from the west coast to the east coast. I decided I would do this and set a six month time frame with which to prepare and move.

The Move

While I was able to move my business from west to east it still wasn't the easiest thing in the world. Just moving from one place to another is difficult. I had lots of tools and materials that needed to be moved. I also had to find new suppliers that had the correct materials 2500 miles away. Also, while I was preparing, I tried to learn as much about this Alzheimer's disease as I could. It took all the six months I had allotted to make a somewhat seamless move. I'm not going to go into all the details as it's not really relevant. Suffice it to say, I made it out there okay and it was rather pleasant to take a road trip. I would be my last for quite some time. I knew this so made the best of it.

First Things First

Pulling in the driveway I took a look around. The yard wasn't kept-up as it should be but this was to be expected. It wasn't bad, just not the way my parents had always kept their yard.

I went to the door and rang the bell as the door was locked. My mother answered the door. She was in her nightgown. It was the middle of the day. This was not a huge deal for me but I had hoped her caretaker would have made her dress during the day. But what really bothered me was she was weak. She was struggling to stand-up straight. I knew she was not that far gone. It was obvious she was not walking and moving about as she should be. My mother has gone for walks on a daily basis since i was a teenager. But she did seem in good spirits so that made me feel a little better. She did recognize me as well, which was a positive sign.

I then met the caretaker who was nice enough and seemed to keep everything else in pretty good order. She had all the boxes I shipped right there in the entryway right there waiting for me. That was appreciated.

She had, unbeknownst to me, taken on her cousin to cover for her a couple days a week to help care for my mother. I didn't know who this girl was and, while she seemed nice enough, I was not too happy about it. My brother knew nothing about it as well.

I spent the next few days "checking" things out around the house to see if anything needed attention or not. There were a few odd things I noticed. Like the shed was filled with lawn chairs. I had no idea why. They had yard sale price stickers on them. I'm guessing my mother (or someone) bought them an stuffed them in there. Her car in the garage had flat tires, meaning, it hasn't been driven for many months. This too was to be expected. She couldn't drive anymore and her car just sat as her caretaker(s) would take he wherever she needed to go. But something wasn't right. I had nothing really to go on, just that my spidey-sense was tingling.

One day something told me to check her credit. I'm not sure where this idea came from. I did want to put myself on deed for but this really had nothing to do with here credit. Well I went and did the whole free credit check online and checked all three reports. Two were okay. the third was not. Apparently my mother had moved to another town nearby. At least that's was the report said. There was another address on report than her own. There were charges on her card that she did not make. In other words - identity fraud had occurred. To make a long story short, it turned out to be the caretaker's cousin she'd hired. Go figure. I had a file that was an open and shut case on this chick. I had all the data from the credit reports and data I had sent to the credit card companies. I reported it and then showed the detective when he came to investigate. It was pretty clear what had happened. What I didn't expect was, as the detective dug, he found that her son worked for a correctional institute and was worried, after the detective talked to him about what his mother had done, that his mother would go to jail. The detective told me this. The case was then buried. That's right, never prosecuted. The good ol' boy network strikes again. I had a decision to make; do I pursue or let it be? I let it be for the sheer fact that time and money would be needed to fight this. Neither which I had an abundance of. I'll not completely trust authorities again.

I told this story to illustrate what can pop-up at any moment to make your life even more difficult when dealing with Alzheimer's and don't let anyone in the house without fully checking them out and without supervision. I let my brother handle all the hiring and maintenance of this woman but only so much can be done from a great distance (he lived near the west coast as well). We were ignorant and it bit us in the rear. The damage was rather minimal though as my mother was not responsible for the debts incurred and her credit was repaired. I don't know if the credit card companies pursued this woman or not.

I need to mention that none of this could have been discovered and corrected if I didn't have Power of Attorney (POA). That was the first thing I did when I arrived. You will not be able to do a thing without it. It allowed me to do anything that required any legal action - bank accounts and the like. I had to send a copy to the credit card companies. Also, whenever you're dealing with any "official" entity. It is best you tell them immediately that you have POA and ask how and where to send a copy. You won't get anywhere without it.

I mentioned earlier I wanted to be on the deed to my mother's property. I felt it best and may make things easier (as was with the POA) if anything came up. I eventuality came to the conclusion that that was not the best solution. I decided that all three of us brothers should be on the deed. After all, it was only fair and would alleviate much red tape when my mother did finally pass. I mentioned I wanted to be on the deed before making the decision to take care of my mother. My brother didn't seem to be excited about it but never pushed the issue. Neither did my other brother. This I recommend if you can swing it and all parties involved agree to do this.

As Time Goes On

Well, I'm officially all moved-in now and the daily routines begin. The biggest thing that can get to you is the uncertainty. You don't know what the person is going to be like from one day to the next. There are good days and bad days. You don't know how fast the disease will progress. My mother's was very slow. Worst of all, for me anyway, is you don't know how long you'l be taking care of this person. Months? Years? I talk a little more about that below.

My mother would take her meds on a daily basis. She was give her dose from one of those containers that had the days of the week on it so it is easy to keep track of. All went pretty well until my mother decided to take it upon herself to self-medicate. She would walk in and take the next days pills, then walk away. Sometime later she would do it again. I noticed immediately and hid the medication container from her. This did not set well with her and she demanded she could do it herself.

A bit about what I've learned about Alzheimer's; It will amplify the person's basic personality. If the person is naturally high-strung, the disease will amplify that. If they are somewhat violent, it will amplify that. Fortunately my mother was naturally very quiet and never complained. However this became an issue in that I never knew what was wrong with her. If something bothered her she would not tell me even when asked. This resulted in a few unexpected doctor visits. Let me illustrate this a little. Decades prior, my mother was pregnant with twins—a boy and a girl. She miscarried and was hospitalized. I was around ten years old at the time. The first I heard of it was when I was in my mid-forties. My brother mentioned it in passing as if it were common knowledge. I did not know my father had lung cancer until after his first operation. I was in my early forties when this occurred. My parents were of the mindset to not upset their children with bad or upsetting news. This they took to the extreme. Who knows what went on without my knowledge. They very rarely argued in front of us as well. My point here is, whatever the personality, it will be amplified.

I learned to poke and prod when my mother didn't seem to be acting well. I saw her once touch her jaw in an odd manner. Come to find out she was in pain.

Keep a close eye on them as best you can. You'll learn their little quirks and tricks to notice something that may require attention.

Some Very Odd Behavior

As you may suspect, you're going to run into some very odd behavior with this disease. The person will definitely progress back to childhood and even begin to act as a child. But there may be other odd or strange things that occur as well.

I'm just going to tell you a few things that stand-out in my mind that my mother did.

I ordered something online one day and they was watching the tracking on it. I was away at the store (this was very ealy on so my mother could be left alone for a brief time) and when I returned I checked the tracking and it said the package had been delivered. I searched in vain but no package I looked everywhere (even in the oven and washer and dryer). No package. I went from house to house to see if it was mis-delevered. Nope. I asked my mother. She had no recollection of any package delivery (I didn't believe her). I don't remember if it was that same day or the next. when I went to the my truck for something and happen to look in the bed. Oh look, my package! She had put it in the bed of my truck.

Another time I went to do the laundry and I noticed the lint screen was missing. Again, there I was looking all over the place for this thing. No screen. Then I remembered the package. I went to my truck and looked in the bed. No screen. I looked under beds, in closets, outside around the house. Nothing. Fine, no laundry today. Again, I don't know how long it was but had to go to the store for something. I went to my truck and opened the door. There, in my seat, was the dryer screen. It was so odd a thing I couldn't help but laugh. Apparently my truck was a safe haven for things.

My mother used to walk around the house carrying her keys. She would go to every door and make sure it was locked. Funny thing is, she didn't need the keys to lock the doors. I would be in my bedroom opposite hers and I would see her, through out the day, walk around with her keys, checking doors.

As I said, she would carry her keys around the house. Well, there were car keys on this key ring and she was still aware enough to know this. And as I revived her car from the dead. I didn't want her to get the idea she could drive again. I had to steal her keys one night and go out to the garage and grind them down to where it wouldn't opn the door or start the car. She had her keys and I had my peace of mind—win/win.

She, for some reason, kept losing (hiding - she had been hiding things all her life. She would always have a stash of money in odd places when I was a child) her keys. My daughter and I had a time finding them. It was necessary as my mother would throw an absolute fit (out of character for her) when she didn't have her keys. I solved this by buying a key fob that sounded an alarm when you clapped your hands. It worked well for the most part.

Take Care Of Business ASAP

One of the first things I did was to get all legal matters taken care of. As mentioned above, first was the Power of Attorney (POA) without this you have no hope of anything else, legal-wise. You will need it to be put on their bank account or dealing with medical companies and personnel even turning off the cable if need be. You will need this POA.

Of course getting the POA is possible if the person is still deemed of sound mind. With my mother it was right on the edge but the lawyers were very helpful and patient and we were able to do what we needed.

Next, send the POA to every company or organization you'll be dealing with on a regular basis like banks, credit card companies, utilities and such. Always have a copy ready to email or fax if needed.

Then get your name (and whoever is on the POA that will be responsible as well) on everything that you believe is appropriate. If need be, pay a few bucks and consult with a lawyer. Do not make the mistake of being your own lawyer by using Google to save a couple dollars. Do it right the first time. Many lawyers are familiar with this situation as it is becoming quite common.

This is a process so don't rush it BUT don't procrastinate either. Do it ASAP.

The Daily Grind

That could not be a more apt heading as you may find it to be a grind from time to time.

As the disease progresses so will their inability to take care of themselves. When I first started taking care of my mother she was quite able. Her memory was just not too good. She was able to take walks by herself (her daily routine since I was a teenager) and she would make her a sandwich if she got hungry and was able to take a shower by herself (with a little coaxing) and similar normal tasks.

I'm not going to go into detail about the progression but I'll just say that near the end I was dressing her, washing her, changing her sheets when she wet the bed (get plastic mattress covers—you'll need them eventually), she no longer took walks by herself (I walked with her daily and is usually only a couple hundred feet), I was wiping her after bowel movements and similar types of tasks we take for granted.

Make time for you. You will read this in many articles such as this. Believe it, it is very important. You will need to have some me time occasionally. I recommend you put this in your pre-planning stage. I don't care how tough you are. You'll soon realize even the toughest of us will wear down with the non-stop daily grind. If you don't have any family to take care of them pay a professional. If you don't belive this now, you will eventually. I thought I was a pretty tough guy—able to take anything, and I can, but not for years-on-end. Don't inadvertently beat yourself up—take the occasional break. And I don't mean going outside and doing a little gardening—I did that actually. I mean leave. Go away for a couple days. My neighbors saw how tough it was at times and they literally told me I was going to the beach with them for the weekend and that they would not take no for an answer (I was good at not relaxing). I managed to get my brothers to help out wiith this and I had a really good time. At least that's what they told me (wink).

It's Over

One of the worst things you may encounter is the not knowing when it will all end. You don't know if this will be part of your life for six months or six years or longer. My time taking care of my mother was just over six years.

I was pretty much an emotional wreck in some ways. Others i was fine.

A couple years in I began to wonder how long this would go on. My mother's progression was very slow. From the noticeable onset around 2000 to 2014 she progressed very slow. She was physically fine and had her strength back as I made her walk and do things to keep her strength up. she was coordinated as well. There were no sudden falls really. only near the nd did she need help with walking up stairs or getting in the car. She did good for being in her early seventies. But near the end she didn't know what planet she was on. I don't say that to jest either. She was literally that far gone to knowing who I was and where she was. But she was strong as an ox—a petite one.

I began to take care of her in Dec 2007 and in early 2009 I had lost my business due to the economy crashing. Normally i would have found a way to save it or find some workaround for income. I could not. I was taking care of my mother 24/7. About a year later my savings was gone and I had a destroyed credit rating. We were living on her SS and the military retirement from my father's time in the service. It was lean but I made it work. I felt a little trapped and I was not looking forward to starting life over whenever this was to end. At the time I was in my mid-forties. But it didn't matter what I wanted as I made a commitment and I was going to see it through. I was a mess though.

I tell you all this in hopes you are a little better prepared than I was. I did accomplish my goal of allowing my mother to live out her final days in her own home. As I promised my father before he died that she would be taken care of and that she'd be okay. So that's what i did.

If you have made a similar promise to someone else or yourself that you will make sure your family member is taken care of, just know what you're getting yourself into.

If you can avoid some of the mistakes I've made, I think you'll be able to do a good job and be a happy camper afterward.

Hope this helped.

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Thank you for the kind words and the resteem on this @sandzat. It was a little difficult to write as it brought back a few memories but I felt it necessary. It's my way of helping others hopefully avoid any unnecessary pain or troubles.

This is such a thoughtful and well written indepth post, @forty-two! Thank you for this. I feel what you must have gone through with your dear mother through your writing. It must have been very, very tough. Obviously you cared, and it must have also hurt to watch her fade away. She's in a better place now. Take care. Hope you are doing better. God bless!
Am resteeming this.

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