Where have I been???

Sorry to all, I have been neglecting this blog. I have a reason that I will tell you in a moment. But first I want to share something with you:

 This blog has allowed me to dispense very important and useful information to many people. 

 For the past 10 years, I have been meeting families, one at a time, usually in a crisis and found myself saying basically the same things.  It always bothered me that by the time I met these families they had been suffering or struggling for a long time. If there was only some way I could find a larger forum to disseminate information that would save people a lot of time and needless angst?  So I was thrilled when I learned how to blog and finally found my forum.

The response has been great, and I appreciate all of the comments that people have sent me, telling me that my information has helped them.  That is my goal. I have seen too many really nice wonderful people at the end of their rope. These caregivers are amazing people, doing incredible things at great personal sacrifice for people they love.

So where have I been?  I am in the final stages of building a website.  This website is going to be an extensive and detailed site that will provide tons of information for caregivers. This site is specifically designed and geared for caregivers that are struggling to negotiate the maze of services, agencies, products and programs that can help them take care of their loved one.  The vast majority of caregivers are taking care of someone with Alzheimer’s and so the site will lean a little towards their situation. But there will be much for all caregivers regardless of the circumstances that place them in that role.  What is important is that the site will give away this information. Hopefully, information that you can use right now, to improve your situation.

There are plenty of businesses and people trying to make a buck off of caregivers, and they often slant their information towards their own product or service.  My site will be unbiased. It will be educational. And it will serve both new caregivers that are just starting out on their journey and for the veteran caregiver as well.  Yes, at some point there will be products and services that will be available for purchase from my site. But because information is crucial, the readers will have the information to make informed choices and decisions. 

The blogging will continue and there will also be a newsletter with as much vital information I can find to share with you. But it won’t be shoved down your throat. There will also be videos to watch, and links to other helpful sites.

If you go there right now you will only see a picture of my CD and how to order it.  That is just there for the time being. But if you want to get in on the grand opening of my site, if you want to be informed when the site goes up. You can do a couple of things: you can sign up for my blog (look on the right had side of the screen for how to that), or you can send a comment to me through this blog right here, give me your email address and I will send you a personal email when the site goes live.  So I hope to see you there at www.caregiverrelief.com very soon. 

By the way, I am writing this blog all in one take, and throwing it up, so if there are any typos or mistakes please forgive me.  Thanks for reading…Donahue

2008 Report from the Alzheimer’s Association

2008 Report from the Alzheimer’s Association

The Alzheimer’s Association, a national non-profit organization, devoted to the elimination of Alzheimer’s disease and the care and comfort of its sufferers and their caregivers, has released a comprehensive survey.   The results of which are amazing.  If you want to see the whole study, go to their website: alz.org.  However, over the next few posts, I want to present you with some of the more interesting findings, especially focusing on what they learned about caregivers.

First off let’s start with some basic statistics. There are almost 10 million caregivers in the United States.  The term caregiver, as we use it here refers to family members, friends and neighbors that provide unpaid care for a person with Alzheimer’s or another dementia.  On average, these 10 million caregivers give nearly 8½ billion hours of unpaid care per year, with an approximate value of 89 billion dollars.  I am always curious how they come up with these numbers. Well in this case, they tell us.  The work you do as a caregiver is estimated to be worth $10.58 per hour. (Well at least it’s not minimum wage).  But how does that compare to the paid caregiver? The average wage of a home health care aide is $15.32 per hour.

But let’s break that down to.  Are you running the average?  If, last year, you provided 16.6 hours per week of care for your loved one you’re in there.  But I bet you beat that. One study found that almost 1 in 4 caregiver’s provided more than 40 per week. Perhaps that better describes you.

The study goes on to state the obvious. At least it’s obvious to caregivers…As the Alzheimer’s sufferer worsens the caregiving hours go up. So that caregivers find themselves providing help and supervision 24 hours a day, 7 days per week.  As caregivers you are profoundly aware of such around-the-clock care because your parent or spouse cannot be left alone for even a few moments.  Often you are getting up with the person worrying about them wandering or other unsafe behaviors.

Caregiving, by the way, is much more than helping with “Activities of Daily Living” (ADLs). ADLs, if you don’t know, are helping with bathing, dressing, eating, toileting, etc.  But as you DO know, caregiving doesn’t stop there. Caregivers wear many hats. They make arrangements for medical care, the manage finances and legal affairs and they do shopping for groceries, provide transportation,  help a person take medications correctly.

The study confirms what we knew that most caregivers are women. About 60% are wives, daughters, daughters-in-law, granddaughters and other female relatives, friends and neighbors. The largest percentage is ages 50-64, at 37%. The next largest group is ages 35-49 at 29%.  Interestingly, about a quarter million children ages 8-18 are in the caregiving role, and as caregivers they too assist with bathing, dressing, feeding or helping the person to the toilet.  I doubt they are sole caregivers; that would be ridiculous. But mostly they live in homes with adult caregivers and help provide care for the afflicted person.

Long-distance caregivers make up about 10% of unpaid family caregivers …but there’s more to say about that and other fascinating statistics in the next installment of this blog (which I am trying desperately to put up new posts on a weekly basis). So if you don’t want to miss them, simply look to the right hand side of the screen and look a place to “subscribe” to this blog.  You can do that safely, as WordPress will not sell or give your email address to anyone, nor will they bug you either. You will simply get all future blog posts in your mailbox when they come out.  Try it. If later you want to opt out, it’s just as easy.

 

Too Complicated?

Too Complicated?

Have you been thinking about assisted living for awhile, but when you start to plan it out in your mind it quickly becomes overwhelming? That’s perfectly understandable. After all how do you take a life time’s accumulation of furniture, art, and other personal items and reduce it down to fit into one of those efficiency units that people live in when they move to assisted living. It’s a stopper every time.  Why its just easier to just put it off a while longer.  Fortunately, there’s help. (Good ole American ingenuity, someone sees a needs and then develops a product or service to meet it).  In our case it’s Senior Move Mangers. Senior Move Managers specialize in helping seniors with the organizational skills necessary to reduce decades of accumulated possessions and the emotional attachments of said home and furnishings.  These professionals handle every facet. If your parent owns their home, they even get the home ready for market. They arrange to sell everything from antiques to cars. What they can’t sell they send to charity.  They pack of the things that are going, and unpack them and set them up in the new home.  So when you are ready to help mom or dad move to a safer environment, remember this service, it will save you lots of sleepless nights

coming soon: speicial 2008 report by the Alzheimer’s Association

10 Most Common Mistakes People Make when Moving into Assisted Living

6.  Make nice with the staff

Sounds simple? It is. But it’s also very important in the long run. Your parent is, hopefully, going to spend the rest of their lives there.  These people are going to be the ones you count on to provide care to your loved one. Lets be realistic, your parent would probably not win a senior citizen personality contest.  If they are sweet and friendly and considerate, undemanding and kind then you can skip this step. But chances are they are more than a handful.  You love them and you understand them, but you have a lifetime of history together.  These front line staff have none of that. They are presented with an 80-something year old person and take them at face value.

 Now heres the thing.  As much as we want to believe that the caregivers in assisted living are going to act professionally, and do their job to the best of their ability. And as much as we want to believe that they are trained to set aside their own feelings and prejudices and just provide professional care.  They are people. People that are usually on the very low end of the pay scale and generally they are from other countries and cultures. They need encouragement and appreciation as much as the next person, perhaps more.  It takes a very special person to do this kind of work. Most people would not do it, at any price.  The first criteria for a caregivers, even though it’s never discussed is the ability and willingness to do this kind of work. By that I mean, give old and frail adults baths and showers, and to change an incontinent older adult’s diapers (Sure we are trained to call them briefs, but that doesn’t change that they are really diapers). While these caregivers are the unsung and underappreciated workers on the front lines, they are the backbone of any good assisted living community.  And they are one’s that you should take time to acknowledge them.  

I assure you that if you show caregivers a little attention, it will pay off dividends in the amount of extra attention they will give your mom or dad.  Even if it turns out that their interaction is limited, what time that is spent giving care to your parent will be better.  I have seen time and time again, an adult daughter or son being especially kind to caregivers, and the parent becoming a “popular” client.  Even when the client/resident is difficult, the caregivers go out of their way to show patience to them, or to be more prompt when called to their room. 

Now this will take a little work on your part.  Because it’s not financial.  Most communities are dead-set against tipping.  It’s not that they don’t like their employees; it’s just that they fear the favoritism that results from tipping.  You are paying a lot of money for your parent to be in this community, you certainly don’t want them to get second-rate treatment behind her neighbor who is slipping the girls an extra couple of bucks every day.  Another reason, which is going to sound cynical, management does not want their employees doing something on the side that management should be providing and charging for it.  But to make up for the no-tipping rules, they usually allow for a holiday collection that distributed to the employees from the residents.

All this is to say, showing kindness to the caregivers should be in form other than financial.  Just show them that you are aware of them and appreciate them.  (Even if your mom or dad complains bitterly about them), learn their names, write a nice note to the office about some special thing that they did. It’s very important that it’s written, not verbal.  Verbal praise is too easy to give and easily forgotten.  Whereas a written note shows that you thought enough of the event that you paused long enough to put pen to paper, and even a short one, goes in their file and is well regarded. 

For the most part, caregivers are hardworking and compassionate people. They wouldn’t last long in this business if they weren’t. However, there is the occasional clunker.  Earlier I mentioned showing appreciation to caregivers even if your parent is complaining bitterly.  So what to do if you think there may be a legitimate concern. Well, lets go over the most common complaints and discuss each one: (Generally speaking)

ü  The way they talk to me

o   The caregiver may seem too demanding, or condescending or some other tone or less than polite way of addressing your parent.  The reasons can be cultural, or more than likely due to a poor grasp of the English. Let anything that is personality related, go.  Given the 90-day rule, this issue will resolve itself.

ü  She is too physically rough with me

o   You may not like this but I have to tell you, more often than not it is the new resident that gets  physical with the caregivers.  I’ve seen the sweetest ladies and kindest gentlemen hit, claw, punch, scratch, and push caregivers and the occasional housekeeper.  Generally this is related to taking a bath or a shower. Compound this with the fact that older adults bruise incredibly easily, and suffer from “skin tears” at the slightest bump, and you run the risk of getting a huge overreaction.  If something like this happens, go to the supervisor and in a very open-minded way, ask them to explain how something like this might happen.  By all means, retract your claws when you approach management. 

ü  They stole my…

o   First of all you know better than to bring valuable jewelry, or irreplaceable heirlooms, right? And you made sure that your parents don’t carry a lot of cash? Good.  So the only thing left is small amounts of cash and hearing aides.  I can tell you that unlike nursing homes and hospitals where there are any number of faceless employees coming in and out of their room, assisted living is very compact and controlled in comparison.  Generally speaking, small things like hearing aides will turn up in through search of the room. If they do not, then the next likely thing is they found their way into the trash can.  Stealing is very rare in assisted living. When it does happen, it happens in clusters. We get a sudden rash in “disappearances” and “lost” items.  Usually, around the time that we hired a new person.  When that happens we are quick to act, and we know who to suspect.  Otherwise, chances are good that the “stolen” item was actually lost, thrown away by accident, or misplaced. 

ü  They come into my room without knocking

o   We are constantly doing trainings in this topic.  We tell them (employees), when you go to room and you knock, pause and wait for a few seconds for a response. Most residents are hard of hearing, and don’t hear a knock. Very often they have the Television turned up loud.  It a bad habit when a housekeeper or caregiver gets a rush and does this move where they knock AS they opening door.  More of an announcement that they are entering than a request.  And given time, this resolve itself without your help.

Just beware.  Anything that your parent complains about the first 90 days is more than likely an adjustment issue, an over-reaction, or a manipulation attempt on you at the worst. This is especially true when the complaints are about the staff.  Remember, this is the same staff that you need to get on your side, so you can count on their continued and unofficial support (Because you are such a nice person). 

Some final thoughts: be nice with the staff, but don’t take sides. In other words, there is no reason to defend the staff to your parent. This will just open a big can of worms.  You can be nice and attentive to the staff and still listen to your parent’s comments and experiences. And remember to keep your cool if you feel the need to discuss matters with the administration.

Good luck, it’s going to be a roller coaster, chances are that in a few months you will both be wondering why you didn’t do this much sooner.

If you found this article interesting, I will be posting many more in the next few weeks. To make sure you don’t miss them, wordpress has a subscription link on the right hand side of this page.  Click on “Subscribe to Caregiver Relief by Email”.  Don’t worry, you can unsubscribe at any time, and wordpress will not share or sell your information to anyone.

10 most common mistakes people make when moving into assisted living

Number 5

Not allowing for an adjustment period or over-reacting when your loved one is new.

Moving into assisted living or a board & care is hard.  There is no getting around it. It’s very stressful, and it’s very frightening.   Effectively you are moving from a place where you had your own schedule and your own way of doing things, to a place that has established routines and seems very regimented.  For example, meals are at very specific times, and a new resident’s appetite is often conditioned to a different schedule.  Then there is the privacy factor.  Strangers have a key to their room, and seem to come and go at will. Also resident are required to sign in an out of the building, and people keep checking up on them and pressuring them to attend activities and functions.  Often older folk have been living alone for years prior to moving into an assisted living. The change is upsetting, to say the least.  As you would expect, there is an adjustment period to endure.

After more than a decade in this business, I have discovered a pattern.  I call it the 90-day rule.  If you can get your parent to tough it out, you will see a miraculous change in them, and I assure you it never takes more than 90-days.   At some point in the first 90 days of tenancy, the new resident makes a subconscious transition. You will know that the adjustment has been a success when one day when you call ahead to tell mom or dad that you are coming to take them out and they say to you “Oh no dear, that won’t work, we have (fill in the blank) at that time.” When you have that conversation, the war is over. There may be some minor skirmishes after that, but the bottom line, that this is where they live now, will not be endangered. 

What has happened is that the positives have outweighed the perceived negatives. Your parents have started getting used to having their bed made every morning, fresh linins every week, having someone come in every week to clean their bathroom and vacuum  their carpet. They realize that they like waking up and having breakfast served to them in a restaurant setting.  For that matter, they like that they no longer have to buy groceries, or prepare meals, or wash a single dish.  They are served lunch and dinner much the same way as breakfast, and between the two they can do whatever they like – watch TV, take a nap, etc.  They have probably formed some nice acquaintances with people of their own generation, with whom they can have a normal conversation.  Their laundry gets done and returned folded and on hangers. Then there’s the transportation to doctors, banks, drug stores, restaurants; and on top of that, all the activities provided by the “cruise” director (activity director).  How’s that sound? And we haven’t even mentioned the extras! These are just the ‘basic’ services.  If your parent needs it, there is help available for showering and bathing, and there is escort services for those that are slow or use wheel chairs.

Consider, people’s strong reluctance to move to assisted living is related to their preconceived ideas.  They lump board & care, nursing homes, assisted living all together in their mind as an institution. As a place they are being sent to die.  It is the beginning of the end of life.  Everything that they heard tells them that people don’t come back from “those” places.  Consequently, neither are they ever returning to their home, nor by association they are ever returning to health, to normalcy.

 In beginning, everything that they see and hear reinforces that opinion.  For example when you start touring places for them, you are finding pros and cons with each community that you look at.  Eventually you make a decision based on your best analysis.  Thinking that your parent will appreciate your keen observation and deductive skills you take them to see your top picks, only to be disappointed when they find nothing but fault with them, and flatly refuse to even consider moving there for even a moment. 

That’s not your parent, because he/she doesn’t even wait to see the places before finding fault and refusing to consider them?  Why am I not surprised?  That’s what I’ve been saying, for the most part, parents do not under any circumstances, want to go to assisted living.  So what can you do? You see how much they are declining. You observe that they are unable to manage their home, they have lost most of their friends, they are isolated, they are eating poorly, and they are wearing thread bare or dirty clothes.  Because of declining health and loss of mobility, they are demanding more and more attention from you.  In some case they don’t need to demand it because you see what is going on and are stepping in to help.  But the price you are paying is growing. Your personal life, your work, and your family are all suffering.  Regardless of how much you bring this to their attention, they are adamantly refusing to even try assisted living.  For most adult children, like yourself, you end up having to wait until something catastrophic happens and they end up in the hospital.  At least then, with them flat on their back and the doctor telling them that its not safe for them to live alone, can you hope to crowbar them into a board & care or assisted living community.

So lets say you finally get them into a place.  The battle is not over.  Just like in car sales there is the front end of the sale and the back end?  Now that you have them in a safe place, they are going to raise holy hell.  They will complain mercilessly, they will play every ‘guilt’ card in the deck.  This is the back-end of the figurative deal.  They will demand one of three things.  That you take them back to their home, that you take them back to YOUR home, that you find them a new place, because the one you picked is terrible.

Don’t do it. Don’t give in. Remember, you did your homework and you chose this place very carefully. You were right. Don’t let their exaggerations make you doubt your choice. Chances are better than 99% that the place you chose is perfectly fine.  You need to just ride it out. 90 days seems like a long time, but you have to get through it.  If you have any doubts or concerns that their complaints may be valid go to management or department head.  Don’t be adversarial, just do it in a calm, neutral manner.  The management will appreciate you giving them the benefit of the doubt and work doubly hard to address your concerns.  This brings me to the next point in our list. 

6.  Make nice with the staff

Sounds simple? It is. But it’s also very important in the long run. Your parent is, hopefully, going to spend the rest of their lives there.  These people are going to be the ones you count on to provide care to your loved one.

If you found this article interesting, I will be posting many more in the next few weeks. To make sure you don’t miss them, wordpress has a subscription link on the right hand side of this page.  Click on “Subscribe to Caregiver Relief by Email”.  Don’t worry, you can unsubscribe at any time, and wordpress will not share or sell your information to anyone.

Assisted Living facilities are not designed for older people!

The first thing you should know is that assisted living communities are not designed for older people, at least not the appearance.  But before I explain, let me distinguish between older facilities and newer ones.  Older properties were not built with the physical limitations of older people in mind.  Anything over 15 years old was built like an apartment building. Very little consideration was given to the fact that the average age of the resident would be 85 years old, and the resulting limitations that these older adults were going to have.  Little thought was given to the idea that this building was going to be full of walkers and wheelchairs and people with physical disabilities.  Resulting in bathrooms that are too small, toilets that are too low, and they have tubs instead of walk-in showers. These older buildings also have high thresholds on the doors and along the hallways that are hard for seniors in wheelchairs to get over. The elevators are too small and the common hallways are likewise too narrow and lacking chairs or benches interspaced along their length so that seniors can pause and rest along the way.

Newer buildings, on the other hand, have been designed (in part) by Gerontologists, and have taken into consideration these basic design flaws that older building suffered from.  That’s the good news.  But builders of new buildings hired more than gerontologists. Newer assisted living communities (that’s the term they want you to use, instead of “facility”, which sounds too institutional), were built the same designers that build casinos and upscale resort hotels. 

Here’s the surprise: Assisted living communities are designed to appeal to the adult children, rather than the seniors that will live there.  Because they know that the adult children, if they don’t literally choose the facility, they are a big influence on which facility their parent(s) choose to move into.  That said when you walk into a typical modern assisted living “community”, you will see fine furnishings, and deep comfortable chairs beautiful art on the wall and lot of knickknacks.  You will be taken around to libraries, computer labs, perhaps a small gym, and an arts and crafts room.  You will also see small sitting areas scattered here and there, there will be “country kitchens” or 50’s style “soda shop” kitchenettes.  All of this will seem so inviting.  However, what may not register immediately on you consciousness, is that nobody is using these wonderful amenities.  That right. They are all for show.  They seem wonderful to you. You, can easily picture yourself enjoying those things. That is what they want you to feel. But the people that live there rarely if ever use them.  In fact there are only two areas that residents use: the dining room and the beauty shop.  Outside of an exercise class or a bingo game, the resident do not avail themselves of the “extras”.

Secrets of an Assisted Living Administrator

Do have a family member that lives in an assisted living facility? Do you have friends who have their parents in board & care or assisted living community?  Are you providing care to a parent or spouse in your home, or at a distance, and are you thinking it might be time to put them in a place where they can get more care. Perhaps a place where they can socialize with people their own age, or a place where they can be more active? 

If you are, perhaps you would like to get some information about how those places they work? Are they worth the money? And you may be asking yourself, how can I get more information?

Well, there are many places to find information. First and foremost, you can talk to the facility that you have in mind. Or you can find out which ones are in your neighborhood and go take a tour. There are referral agencies that can give you information. You can call the Ombudsman’s office (look it up if you don’t know what that is), or you can call the Department of Social Services who licenses these care communities. 

But if you have found this blog, then you are going to get information that you will find nowhere else. I am going to tell you the behind the scenes stories. I am going to tell you the secrets of the industry. Some of the information will be trivial, and others will be amazing.  Everything will be covered, nothing will be held back.  From the subliminal marketing techniques used on you the minute you walk in the door, to the behind the scenes dirt of what really goes on.  You will get it all!

So stay tuned…or better yet…drop me a note and tell me your particular interests.