Archive for April, 2014

Rub a dub dub…cleaning up Mom

Mom used to be good at keeping herself and the house clean.  She had a standing, nothing short of the end of the world would cancel her appointment, appointment at the beauty parlor that you could set your watch to and every Sunday no matter what, when I was a child she would make me mop the kitchen floor.  But as the dementia crept over her it changed that woman into messy Bessy.

It is common for those with dementia and Alzheimer’s to change personalities and habits which includes keeping clean.  Mom went from doing the laundry faithfully to Dad taking over.  I don’t recall if she could no longer remember how or if Dad took over for safety sake but whatever the reason was he was doing it…that is when he could get the clothes off of/away from her.

She would take clothes out of the hamper thinking they were ok to wear again or she would sleep in the clothing that she wore that entire day.  The hair appointments slowed down until they ended and her hair was just there with no style at all.  But bathing? I don’t know what Dad did to keep her clean and to be honest I was embarrassed to ask or to do anything about it.

Mom bathed me, I just couldn’t bring myself to bathe her.  I was beyond weirded out – super awkwardness.  The most I could do when I dared try to tidy her up was to get her into the bathroom by saying I wanted to brush her hair – or something along those lines – and then while talking to her constantly to keep her occupied and calm, I would do my best to give her a sponge bath… to an extent.

For those of you who have had children do you recall when your little ones loved playing in the water at bath time and then one day they were terrified of it or would have tantrums?  Yep! Almost the same thing with adults with dementia.  As I wasn’t about to try and cajole mom into the tub lest one of us (probably me) would get hurt I left it at a nice warm soapy wash cloth nice and I’d spot clean her face, neck, arms, under arms, and legs.  Well, the legs if I could get her out of her pants which didn’t happen often; the shirt was a tough enough job to peel her out of that many was the time it was just whatever I could get to with pushing up sleeves.

But her private parts? I couldn’t do it! Just thinking about it I feel awkward.  But it is very important that those parts of the body be cleaned because they are prone to the skin breaking down and becoming infected.   Even more so if your loved one has or is beginning to have issues with incontinence.   If you cannot afford to hire a home care worker who knows how to bathe someone with dementia and you have to do it, what can you do?

Here is a article from Caring.com which has some useful tips on how to deal with bathing mom (and dad too) which I found to be very helpful and informative.  At the end of the article they mention that if your loved one really isn’t for bathing then you could talk to their doctor about anti-anxiety medication to help with the process.  When mom entered the nursing home she became even worse about bathing, eating, and everything else because she was terrified! (more about that in the future) She was eventually prescribed some medication which they only gave her before bath time which, along with a kind nurses assistant, made bathing easier.

It’s a scary road to travel for you and your loved one.  Don’t be hard on yourself;  just keep trying until you find what works.

 

 

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Hoarding but not quite hoarding

Ask any caregiver to a loved one with Alzheimer’s or some other dementia and they will all say that the person they once knew begins to change into a different person with different strange habits.  The habits vary from individual to individual but there is a marked change in their personalities.

One of mom’s many personality changes was hoarding…or was it hoarding? I mean, don’t you have to know you keep tons of the same things in order for it to be hoarding?  The jury is out on that definition but mom began to “collect” lots of things.  She had several mixing bowl sets (all the same kind) a serious collection of tee shirts (but not all the same, just a lot of them) and for some reason she bought enough jeans to open up her own denim store.  And the sad thing about all of that clothing is that she only wore a few of the same things over and over and over.

Now many of us exhibit that same behavior, you know where you buy things because you like them and just know that one day you will wear them but you never do.  This results in your going into your closet one day to find something and you run across an item that still has the tags on it.  Most of us feel a bit embarrassed at this point and bemoan wasting the money whereupon we either wear the item, donate it, or give it to someone else.  But with someone with dementia that doesn’t happen.

While wearing the same things over and over (sometimes with us having to crowbar her out of the clothing so they could be washed) mom continued to buy new things seemingly oblivious to the growing piles of the same items.  As I said, she had one closet in my old room stuffed to near bursting with shirts and jeans while the dining room was piled up with pots and pans and mixing bowls but not to the level of the clothing.

Dad just went along with her while my sister and I tried to thin out some of her collections but that didn’t always go well for us.  Oh there would be a few times when mom would give us something from one of her collections saying she had too many and wasn’t using such and such anymore (I still own one of the mixing bowl sets she gave me) and we’d make it home with the item,  but at other times it would get ugly.

By ugly I mean when I would visit mom and dad she would act reasonably normal, other than being a bit disheveled, and would say “I have something to give you that I don’t need anymore” and then take us back to whatever room and hand us some tee shirts or a pot or pan to take home with us.  But by the time mom and I would reach the front of the house and she would turn around and stare at me, whatever had been given was taken back – with a bit of hostility and accusations.

It took that long (or is it that short of a time) for mom to go from being nice and gifting me something in one area of the house to snatching out of my hands whatever it was that I was holding and for her to rail on me about taking her things and why was I trying to steal from her.  The first time she did this I made the mistake of trying to argue with her – “Mom you just gave me this stuff! I’m not trying to take anything from you!” Dumb move on my part but this was something I had to learn the hard way; many caregivers do.

After that I either avoided accepting anything from her, got better at sneaking things out, or I would come up with something along the lines of she asked me to bring these things into the other room for her, etc., or I would just not say a word because in the next few minutes it would all be forgotten by her anyway.

When dealing with a loved one exhibiting this sort of behavior the best you can do sometimes is shrug your shoulders and go with the flow; arguing will get you absolutely no where.  And if you have to help clean out some things it might help if you remove items one or two at a time and space out the times when you do it but don’t try doing it in front of them!  It’s amazing how their memory will pop back in just when you least suspect it.

Remove things when they are occupied in another part of the house with someone else (although paranoia sometimes creeps in and they will want to know where you are and what you are doing) or if you have access to the house when they are gone, like when they are out at the doctors or to lunch with someone, to do it then.  These are just suggestions there is no one size works for all.

You have to figure out what works best for them and for you.

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Peanut Butter and Recognizing Famous Faces Tests for Alzheimer’s and dementia

Alzheimer’s disease is difficult to diagnose before symptoms start showing up, because there is no single test that can definitively determine whether a person has the degenerative brain disease.

Could a scoop of peanut butter and a ruler become that elusive test?

That’s what researchers at the University of Florida’s McKnight Brain Institute Center for Smell and Taste are hoping. They found patients with early-stage Alzheimer’s disease had more difficulty smelling peanut butter held at short distances from their nose than people without the disease.  Courtesy of CBSNews.com  For rest of the article click here.

This test is in it’s infancy and had a small sample of patients that were used.  But even with that, with no cure in sight and only medications to hopefully slow down the effects of dementia/Alzheimer’s it is something to consider.  My statistics and research method professor would raise one eyebrow at me and say that a much larger sample size would be needed and I hope they do more research on this finding.  I imagine that providing the patient didn’t already have a diminished since of smell or physical problems with their sense of smell this could be interesting.

After reading this I immediately wanted to go find a jar of peanut butter and do a bit of a lay test to see how well I could smell the peanut butter and from how far away.  There wasn’t any in the house so I had to limit my “test” to smelling bacon cooking in the kitchen from the second floor of the house 😉

 

The second test (again another small sample size) consisted of  “testing 30 people with primary progressive aphasia (PPA), a rare kind of early-onset dementia that occurs when parts of the brain degenerate to cause problems in speech and language. The researchers also looked at 27 people without dementia that acted as controls.  People with this type of dementia consistently forget names of famous people they once knew — it’s more than forgetting a name or two of a famous person.” Read the rest of this article here.

Again there goes the voice of my stats and research methods professor about the small sample size.  I also think  you might want to take into account that some people just may not know or ever knew who some of those famous people in the test were.  We are talking about a cultural bias possibly here but I digress.  We’ve all known someone who just cannot remember names of people to save their lives but are otherwise perfectly on the ball.  And we’ve all had the “tip of the tongue” syndrome where we just can’t recall the name of a person, movie, song, etc. for anything until later on in the day in the middle of our soup and we have our eureka moment and remember what we couldn’t earlier.

It happens.

But as Catherine Roe, an instructor in neurology at the Washington University school of medicine in St. Louis, Missouri said “To help us know how to use this test as a screening tool,” Roe said, “more research needs to be done to figure out whether this test distinguishes all people with dementia from people without dementia or whether it distinguishes only people with one particular type of early-onset dementia from people without dementia.” Quote courtesy of CBSNews.com.

To all of this I say keep plugging away researchers! Keep plugging away!

 

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Coping, stress and caregiving

When I needed to get things done for mom and dad I was so singularly on task that I would go at doing what needed to be done for them for however long it took until there would be a break in the action.  I think there were times when I had an out of body experience almost when I had to do some very hard things.  There would be an emergency and I’d take a deep breath and part of me would step back while the other would dive right in.  I saw blood, pain, sadness, wounds, amputations, injuries, and eventually death and didn’t whine, whimper, cry, or even bat an eye when I was in the moment.

I once stared down a doctor who got snippy with me about a wound my dad had that wasn’t healing from his diabetes.  I was questioning  if amputation was really necessary; was there any other way.  He pulled back the dressing and  – well I won’t say what I saw but it wasn’t pretty – thinking it would just make me squeal like a little girl.  At that moment part of me stepped behind me and cringed while the other part of me was quite deadpan.  The amputation had to be done but I wasn’t going to let dad sign a thing until I was totally convinced there was no other way.  When it came to taking care of my parents I was a force to be reckoned with; no room or time to wimp out.

But what about when those moments were over?  Between emergencies I was in a constant state of stand-by.  Never turned off my phone, would be hesitant to go on vacation, neglected to feed myself sometimes, developed panic attacks which I never had before, had irregular sleeping habits, and sometimes would have bursts of anger and/or tears out of nowhere.  I don’t recall having any nightmares but I did have some oddball dreams once in awhile.  When my care giving days were over I sat there in a fog wondering what was I going to do now.  I had been so focused on my job as a caregiver that even though there was a sigh of relief over not having to do it anymore and that my parents were no longer suffering; I was lost.  I almost missed doing it and actually felt useless.

Even now when I see, read, hear of, or talk to someone about care giving or Alzheimer’s or diabetes I have a bit of a inner twitch; it pings memories.  I acknowledge those feelings and then they fade away – most of the time – unless it’s just one of those days where something as simple as  an old picture or seeing a mother and daughter out together for lunch sets me off and I fight back the tears…or just cry and cry.  And I won’t even mention the panic that seizes me sometimes when I can’t remember where I put the keys, someones name, a word, or why did I just walk into this room.  I have to go through my training and tell myself “You know the difference between just momentary forgetfulness and dementia, calm down!”

Being a caregiver takes a lot out of you.  You are taking care of someone but who is there to take care of you? We all need help sometimes and there is no shame in asking for or seeking out help.  In fact it’s one of the best and smartest things you can do; nothing embarrassing about admitting you need help.

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Mom and the telephone

Mom could use the telephone up until the dementia took over and would drive me absolutely bonkers doing it!  They had this very old fashioned rotary dial black phone (thing was so solid and heavy you could’ve hurt someone with it) on a stand in the kitchen with the yellow and white pages phone books underneath and this black personal phone book with all of the numbers of the children, friends, the car repair guy, and her beautician.

In the early stages of her descent she would call me up and ask me to look up a number for her in the phone book (this was before everything was online) and I would be totally exasperated.  “Mom, why are you calling me to look up a number for you?” I would ask.  And that is when the excuses would begin.  Excuses like her phone book was out of date, she couldn’t find the number, the print is too little for her to read clearly, and of course the….”What? You can’t do this for your mother?” comment.

It drove me nuts but I didn’t think much of it other than how it was a pain in the rear to me; I really didn’t try to do something, anything about it.

Slowly it began to change and it wasn’t a good one and sadly I still didn’t quite know what was going on or what to do.  She began to call me and say that there was some man outside in the yard and what should she do.  Or that there was a strange man trying to break into the house would I call the police for her.  Or that she didn’t know where daddy was and was in a slight panic.

Guess who the bad man was that was trying to break into the house, etc.?  Yes, it was dad.

I knew each and every time it was dad who was outside trying to get in.  Why was he trying to get in? It was because almost as soon as he would go outside to take out the trash or get something from the car or anything that involved him going outside, mom would lock the door not remembering he had stepped out.  Sometimes he remembered to take his keys with him and sometimes he didn’t.  It was when he didn’t that I got those calls from mom.

I would try and calm mom down while working slowly and painfully at getting her to understand that it wasn’t a strange man skulking around the place,  it was her husband out there and that she had locked him out – again!  This worked for awhile until the awful combo of dad’s health declining along with the dementia taking more of mom meant things were transitioning from annoying to dangerous.

I don’t recall how I finally convinced my parents to let me have a key to the house – they were both becoming more paranoid and increasingly withdrawn from the world – but thankfully I did because one night I got a phone call not from mom but from their neighbors across the street.  Mom had locked him out again and he hobbled slowly and painfully across the street to ask them to call me.  You see, dad had advancing diabetes (which had not been diagnosed yet) and the nerves in his lower legs were racing straight into permanent nerve damage.  Poor dad must have been so embarrassed because he had been working his level best at keeping moms declining mental health a secret from everyone.

So I made the half hour drive from where I lived telling my family that I had to help dad/grandpa back into the house because he was locked out accidentally.  Mom was all flustered when I opened the door to let me and dad in; I made sure that I made the announcement of “Hi mom, it’s me!” before I walked in because she was also beginning to become a bit violent sometimes in this stage of the disease.

After that time I think dad got the clue to always keep his keys on him.  To help them with phone issues I bought them this big button phone and keyed in all of our numbers so that all they (by this time mainly dad) had to do was push #1 for me, #2 for my sister Eve, and so forth.  When they both entered nursing homes that phone went with dad to his room.

It was a rough patch in the road of being a caregiver; just one of many more to come.  And right now I wish there was a button I could press to hear their voices again on some device; their healthy not sick voices.  I’ve only got one VCR tape somewhere, I hope, that has my parents on there talking to me and my sisters at a family dinner.  It’s the only thing I have of them besides some photos.

Today there are videos on phones and other devices where you can capture your loved ones for posterity.  You can carry those memories with you or have them on your computer or tablet.  I highly recommend that you do because one day you will want to see and hear them again as they once were or to share them with family that never had the chance to know them.

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