Sunday, November 18, 2012

The most important way you can help your elderly loved one....

I cannot stress this enough:  VISIT.  As often as you can, every day, if possible.

I'm not going to sugar-coat it, visits these days are hard.  My mom lives in a different reality than I do.  She barely talks and barely eats.  She's not able to follow a TV program or a movie.  Most of the time, she can't follow a story I read to her.  I have heard many people say things like "I can't stand to see my loved one like that, I just can't go very often!" And I am the first person to admit that it is tough.  I have so many memories of the Mom that I grew up with....and now I have this shell, that kind of looks like her, but isn't anything like the Mom I knew before. response to the "I can't visit" people?  How many times was your loved one there for you, even when it was hard?  Yes, it's hard to see my mom wearing diapers.  But she stayed with me when I was wearing them.....she fed me when I needed help eating....hugged me when I needed a on earth could I deny her the same things that she gave to me????

I didn't set out to do it this way, but I do visit my mom almost every day.  Sometimes my visits are only 15 minutes, but that's usually enough for me to reassure myself that she's ok and give her a hug.  Other times, I may stay several hours.  I've come to realize how important my visits are, so even now, when my mom doesn't know who I am any longer, I continue to go as often as I can.

Here are some reasons why:

1) Your loved one will thrive on the visits--loneliness is common in nursing homes and assisted living settings--your visit, even if it's a short one, may be the best part of the day!  With my mom, well, like I said, she doesn't know me as her daughter any more.  She calls me "Donna Mae" (my real name is Carol) on good days.  On most days, she just mumbles.  But I believe that somewhere in there, her heart and soul still recognize me, and even if that's not the case, I want my mom to know that someone loves her, even if she doesn't know who that is.

2) The aides do the best they can, but they are (in almost every nursing home I have ever heard of) chronically understaffed, and do not have time to notice everything that is going on with your loved one.  Even if you are not very observant, chances are, you will notice changes faster than the staff will.  Sometimes this can be the difference between life and death, and sometimes it is just a comfort issue, but that can be a big one, too.  There have been several times where I have asked about a change in my mom that I observed, and it turned out that the staff had not noticed or made the right connections.  For example, when my mom received a new Geri-chair (this is a wheelchair that allows for different body positions and reclining, etc), she became very agitated.  The staff at the nursing home did not have time to delve into "why" she was agitated, but they spent a lot of time trying to calm her down.  At my visits, my mom kept saying that she "couldn't walk".  But she had not been able to walk for a long time, so that seemed odd.  Eventually I realized that "I can't walk" was her way of expressing that she was upset that her feet were not touching the ground in her new chair.  We notified all the aides and nurses, and, sure enough, once her feet were back on the ground, the agitation was gone, too.

3) More attentive care.  The more often you visit, and the more active a role you take in your loved one's care, the more attentive the care that your loved one will receive.  It's not that the aides care less about the residents that receive fewer or no visitors, I think it kind of goes back to #2 above--if you, as a family member are there, you are more likely to notice things, point things out, and ask questions.  Every day when I arrive, I ask the aide(s) what and how much my mom ate.  Then I ask if she has had a good day.  Now that they know that questions are coming, they usually don't even have to look it up!  And, since they know that I am thrilled when my mom eats a lot (she often only eats 200-300 calories a day these days), there are some aides that will try extra hard to get her to eat "just one more bite".....better care, you know?

4) You can help with the cares that you are comfortable with.  An especially good example of this is mealtimes and snacks.  Many elderly people eat very slowly and have to be assisted with their food.  But in the dining room, it is usually the same aides that are responsible for everything else.  That is, each aide might be responsible to care for six or seven residents, or even more.  Now some of those folks can eat on their own, but certainly some of them need help.  So the aide does not have time to sit with my mom for 30 minutes to help her eat.  And at snack time, if my mom can't feed herself, she gets a juice instead of ice cream or a cookie, because the juice is the lease time-consuming.  Once again, this is not because the aides are lazy, they have to make sure that every person gets a "snack", and they just don't have the time to help as much as they would like. This is where I come in, as my mom gets better nutrition if I am there at mealtimes or snack times.  If I get there between meal/snack times, I will ask an aide for something and they are happy to get it for me. 


If your loved one can still talk on the phone, try to call as often as you can to let them know that you are thinking of them and to keep them connected with the rest of the world.   Your loved one may tell you things that they aren't telling the aides, such as aches and pains, or likes and dislikes, and you might pick up on changes in your loved one that need to be looked into.

If your loved one has difficulty on the phone, talk to the nursing staff and find out when a good time to call for an update is.  Ideally you should call as often as you are able, of course.  Be considerate of the nursing staff's schedule--remember they have other residents to tend to--but your priority is your loved one.  Ask lots of questions--is my loved one eating and drinking?  Any bruises or fevers?  Any behavior problems?  What does he/she do during the day?  What is he/she doing right now?  This will give you a good idea of how things are going.

Another thing you can do is look into having a volunteer visitor for your loved one.  Some senior organizations and most hospice organizations have volunteer visitors who can go and spend time with the resident.  This can help you have a better idea of where things are really at, and will undoubtedly comfort your loved one.

In general, whether you are near or far from your loved one, the more attention you can give them, the better they are going to do--and the better you will feel about the decisions you have already made, and the decisions that you will need to make in the future.

Wednesday, November 14, 2012

Dreading the Nursing Home

My mom lived in her assisted living apartment for nearly four years.  She loved the apartment, and, as her needs grew, the staff made adjustments for to her, and all was well.  Unfortunately, there were times when she had to stay in the "rehab" unit of the nursing home, usually after a hospital stay.  The rehab unit was actually very nice, and Mom actually enjoyed the physical therapy that she had to do....but she definitely didn't want to live there.  And I shared that sentiment.

As her needs progressed, though, there were several times where I thought "Oh no, she is going to have to move to the nursing home!"  To me, although I had little experience with nursing homes, I believed that the nursing home was the place you go to die.  And I didn't want that for my mom.  So I fought tooth and nail to keep her in that apartment.  When she had a UTI, I would stay overnight with her to ensure her safety.  When she was in the rehab unit, I would talk about how wonderful it would be "when you get to go home to your apartment again".... and continuously reminded her of that.  For, in our situation, at this point, there was no other option besides the nursing home.  Mom could not live at my house.  I was working full time, and my husband's mental illness caused him to be undependable.

Unfortunately, her needs did progress to where the assisted living could not keep up any more.  In case you weren't aware, the assisted living facility only has a few aides to help all the residents, because most of the residents are still very independent and only need help once in a while.  My mom, however, could no longer dress herself at all, or comb her hair.  Then she could not remember how to use the toilet, or what to do with the toilet paper.  When it got to be that the staff were spending too much time with her, and it was to the detriment of other residents, well, they didn't have to ask Mom to move--the writing was on the wall.  I have, however, heard of assisted living residences requesting that a resident find a new place to move.  And now that I've seen firsthand how it all works and why Mom had to move, I understand much better.

The moment I had dreaded finally arrived.  I cleaned out Mom's apartment.  She was not going back there.  It just about killed me.  I brought things to the nursing home that were rather impractical, like her Christmas wreath for her door.  But I just couldn't admit that it probably wasn't needed any more.  I even kept my key to her apartment.  I just couldn't give it back to the management (isn't that silly?). 

But you know what?  I realize now, that the move to the nursing home was incredibly hard for me.  But for my mom....this terrible day.....well, I didn't know how bad things had gotten.  By the time she was in the nursing home, she didn't even really recognize that she wasn't in her apartment any more.  Really, HER transition was a "piece of cake".  All the pain was on my part only, and I'm still surprised about that.

Saturday, November 10, 2012

Aids to independence

Although there are many books and websites dedicated to dementia and Alzheimer's, if your loved one is suffering from one of these illnesses, you will quickly find that things don't go the way the book says they will.  One of the things I found was that while my mom was generally successful in her assisted living setting, there were things, as her journey progressed, that she could no longer do, and distressed her greatly.

The first problem we encountered was difficulty dialing the phone.  We provided her with a phone that had very large buttons on it, so that she could see them better.  But this did not solve the problem.  Really, the complexity of looking at a phone number on a piece of paper and then typing the numbers on the phone was just too much.  But my mom loved to call me and my brother.  Our solution:  a device that hooked up to the phone so that the phone became voice activated.  Once we got it set up, all Mom had to do was pick up the phone and say my name, my brother's name, or names of other people she might want to call.  We also programmed the portable phone that the nurses carried, the "name" my mom had to say to call that number was "help".  I never knew these devices existed.  But once it was set up, it made a big difference.  You can order them from the internet.

Another problem that arose after my mom had been in the assisted living apartment for some time was that she was no longer able to maneuver the toothbrush and toothpaste.  If you think about it, putting toothpaste on your toothbrush is a complex task.  You have to hold the toothbrush in one hand, the toothpaste in the other, and squeeze just enough toothpaste out of the tube and onto the toothbrush.  It just got to be too hard, and when my mom made a mess of the toothpaste, that really upset her.  The solution?  A disposable toothbrush with "tooth powder" already on the brush.  All my mom had to do was wet the toothbrush and she could brush her teeth.  Then she could throw the brush away.  We ordered these from, which is a site that sells bulk toothbrushes.  Surprisingly, a case of the pre-pasted disposable toothbrushes were less than $25.00.  My mom loved them.  The only drawback, and it was a minor one, was that each brush came in its own wrapper, which was also tough for Mom to handle.  So once a week I would unwrap a weeks worth of toothbrushes and put them in her toothbrush holder for her.  A small inconvenience in exchange for the huge amount of stress it averted in my mom.

My mom loved to listen to the radio.  She had a favorite talk radio station, and also she had a country music station that she listened to, and then there was the local small town station that had all the local events, and played "golden oldies".  The trouble was that she could not work the radio to change the station.  She would try to change the station, have difficulty, and become distressed because once the tuning had moved, she could not access any station at all.  It would seem like a simple problem, after all, cars have had radio pre-set buttons for years.  But try to find a radio for inside your house that has this feature!!!!!  Not easy!!!!!
Finally we found that Timex makes a radio with station pre-sets that Mom could work.  Another problem averted!

Clothing problems also arose as Mom's problems became more apparent.  She could no longer tie her shoes or button a shirt.  For us, these were simple solutions--shoes with velcro straps or slip ons instead of laces....and eliminate the button down shirts.   Other families might have clothing related needs that are more complex. is one store that sells clothing geared specifically towards disabled people, including dementia patients who disrobe inappropriately. 

For problems that aren't mentioned here, I would highly recommend  This is a store specifically geared towards families with a loved one who is suffering from dementia, although other health problems are represented, too.  They have sorted their products into "early", "middle" and "late" stage products, and many of the items are simply genius!  They have videos and "gadgets" to keep your loved one occupied, books for caregivers, even little sticky notes that a person of the opposite sex can place on a public restroom door, alerting others that he/she is present in the restroom to assist their loved one.  Anyone with an elderly loved one should take a look at this site.

Last but not least, "Google is your friend"!  If your loved one is struggling with a specific problem related to independence, I can guarantee that even if you have never heard of that problem before, dozens of people have already found ways to deal with it!  At the very least, it makes a caregiver feel less alone, knowing that others have walked the same path.....but most of the time, someone else's creativity will help you find a way to help your loved one.

Thursday, November 1, 2012

Durable Power of Attorney and Advance Directives

As your loved one is less able to care for him/herself, there will be times when you, or some other family member, need to help them with their personal affairs and decisions.  It is very important to consider the possibility of a Durable Power of Attorney while your loved one still has the capacity to make this decision.

The Durable Power of Attorney sounds intimidating.  But really, all it is is a document that gives another person the ability to act on your loved one's behalf, even if their mental state deteriorates.  For example, if you need to sign checks or otherwise access their bank funds to pay bills, a Durable Power of Attorney will show the bank that you have permission to do so.  If, along the journey, your loved one is not able to make decisions, you can act on his/her behalf and ensure that their needs are met.

This is also a good time, if it hasn't been addressed, to consider a living will for your loved one.  Five Wishes is a very thorough and thoughtful advance directive that you and your loved one can do at home.  Keep in mind that you should be as specific as possible.  My mom's advance directive specified that she did not want to be a burden, and she wanted to have a good quality of life.  First off, I would never, in a million years, consider her to be a burden, but also, how do I determine if my mom's quality of life is good?  Even right up until recently, she smiled, gave hugs, ate her favorite foods.....I wish I would've had more specifics as to what she would want if she was in the condition she is in now.  Five Wishes goes into those specifics.

A Durable Power of Attorney does have the potential to be abused, especially where a loved one's funds are concerned.  It would be best if some sort of accountability could be set up so that the rest of the family is aware of the state of the loved one's finances.  Elder abuse is very common these days, and often it isn't discovered until the elderly person's funds have been seriously depleted.

A Durable Power of Attorney will become more important as your loved one is less able to do things on their own.

In some states the Durable Power of Attorney will enable the designated person to make decisions about your loved one's health care, including termination of care and life support.  Sometimes this function is called "Health Care Power of Attorney".  Although assisted living/nursing home usually let the children make many of the decisions for their parents, there will likely be situations, such as a hospital stay, where that might not be the case.

Your loved one and family should consider all the aspects of this decision well before it is needed, because if your loved one is not mentally able to understand this designation, it won't be possible.

Forms to designate a Durable Power of Attorney are available on line, or any elder law attorney can help your family with this, also.

Wednesday, October 31, 2012

Benefits of a Geriatrician

Elderly folks are different from us.  (Big shock, huh?)

If you live in an area where there are geriatricians, I would recommend making a "get to know you appointment! If you live in an area where a visit to a geriatrician would involve a long drive or other inconvenience, please keep in mind that if you are struggling, or if your loved one is struggling, that inconvenience would pale compared to the benefit that you would probably get from a geriatrician. 

Geriatricians have special training to help them be more aware of the needs of elderly people.  They are very familiar with conditions and illnesses that tend to be associated with "old age", like incontinence, nutrition, falls/fall prevention and memory problems.

A geriatrician can help with behavior problems and "acting out".  If your loved one has any type of problem that is causing your family or the facility stress beyond what is "normal", a geriatrician might be in order.

A geriatrician is also more aware of some of the medication interactions and side effects that elderly people may be more prone to.  Since the metabolism of an elderly person is different from that of a younger person, drugs that we wouldn't think twice about can cause significant problems in an elderly person.  Many non-geriatrician doctors are very good at what they do, but aren't fully aware of some of the problems that medications can cause.

On the flip side, though, a geriatrician has likely "seen this before", if you are dealing with a specific problem.  They are aware of resources and medications that can help.  Sometimes just talking to a geriatric team can make you feel less alone, because virtually nothing you tell them about your loved one will be shocking to them, and they can reassure you that you are doing just fine!

If you do not live in an area where a geriatrician is available at least on an as-needed basis, I would suggest that you ask the staff at your loved one's facility (or even at your loved one's clinic, if he or she is not in a facility yet) which doctors seem to be more skilled in treating elderly people, and which doctors are kind and gentle with elderly people--doctors are just regular people like you and me, and many of them are "younger".  They may not have had a lot of experience with dementia or other problems of the elderly, so it's good to find someone who has.

Tuesday, October 30, 2012's not always a UTI

Even though my previous post alerted you to the fact that confusion or unusual behavior may be a UTI, it isn't always.

Especially as my mom's dementia progressed, she was less able to communicate discomfort to us.  Usually discomfort manifested as confusion and agitation.

Some of the things that caused confusion for my mom:
1) UTI
2) heart attack --really, she had no chest pain, she just was really confused and "didn't feel good" and couldn't get out of bed.
3) medication interaction or side effect
4) excessive ear wax causing discomfort and difficulty hearing
5) a bad cold

I'm sure there are others, too.  But the main point of this post is that unusual confusion can signal a problem and should be checked.  

Don't be afraid to overrule the staff of the facility if you believe that your loved one needs medical care and they think it's just "natural progression".  Believe me, you'll feel better if you have some tests done and find out it's "nothing" than you will if your loved one's condition worsens because you didn't take action.

Sometimes the staff of assisted living facilities and nursing homes see so much dementia and so much confusion, that what you recognize as "abnormal" might look "normal" to them.  YOU ARE THE BEST JUDGE OF WHAT IS NORMAL FOR YOUR LOVED ONE! 

Monday, October 29, 2012

UTIs--they usually "come back"!

Well, after that first portentous UTI, silly me, I thought we were out of the woods.  But even once we got Mom settled into the assisted living center, the UTIs came back.  And usually, because I was so unaware, and the staff of the assisted living was relatively unaware, we didn't always recognize them at first.

The first sign was always confusion and behaviors that weren't normal for my mom.  But since we all recognized by this time that she had dementia, it was difficult to determine if the change was just "natural progression" of the Alzheimer's, or "something else".  For a while there, every time something concerned me, I was requesting a test for a UTI. 

One more nice thing about the assisted living place, though, was that they were able to do the test right there in the facility so that we didn't have to stress my mom out with a doctor visit.

So.....when in doubt, check for a UTI.