Merry Christmas!

To all who celebrate-- Have a very Merry Christmas!!

Happy Holidays! Resources for Caregivers

Take time for you!! Don't forget to spend some quality time with YOU over the next couple of weeks. The holidays can be very stressful for anyone, add in caregiving responsibilities and you might find yourself over the edge with caregiver burnout or caregiver fatigue. So take time to recharge your own batteries and relax!!

On January 11, you might like to tune in to an online chat sponsored by the Chicago Tribune. They will be chatting with the authors of The Care Organizer. It looks interesting, I haven't had time to review it yet, but might me a good present for yourself!!

Add it to your shopping list along with The Everything Guide to Caring for Aging Parents.

Happy and Safe Holidays!!!

Enjoying the Holidays with Loved Ones

The holidays are almost upon us and they can be stressful in the best of times. If you're also caring for aging parents, there are many other things to think about such as how to safely get them to and from your celebrations. They may tire out quickly and have to be taken home early. Be prepared. If they have diaper issues, you'll need to make sure you have plenty and bring a change of clothing along-- just in case.

Make sure you plan for toileting every couple of hours and if someone has to assist, add that to the to-do list to enlist someone to help. Perhaps they will need some assistance with eating or need their food cut up, chopped or even pureed. Allow time for this and assign someone to assist with this. Make sure you have any medications that need to be taken during their outing. And plan for bad weather causing you to get shut in.

The holidays can also be a time to reminisce and make sure that stories and traditions get handed down. Ask them about their childhood, where they lived and went to school. When did they marry? What kind of work did they do? Where did they live? what did they do for entertainment (before television, video games and the internet!!)?  Maybe have a video camera running in the background to capture some of these moments. And be sure to always take lots of family group photos. Make lots of memories, as they help keep loved ones alive in our hearts when they are gone.

Take time for yourself, and remember that there is NO SUCH THING as a perfect holiday. Being with the ones we love and enjoying their company and a few laughs is the perfection you can expect. The best holidays are the ones that everyone remembers, and they often stand out for their imperfections! So relax and enjoy!!

Photo by monmart

Finding Resources

While it would be nice to be prepared for any event in life, sometimes it's just not possible to be that well organized and prepared. Part of the problem when dealing with aging parents or spouses or other relatives is that we really don't want to face the fact that they are aging and having challenges and struggles. It would be great to keep everyone young and active. But the fact is, age creeps up on all of us and lifestyles take a hit.

So when you need to find some resources to help meet the needs of your aging loved ones, one of the best places to start is with your friends who are experiencing the same process. Then the Internet can offer lots of information.

A good place to begin your online search would be with the Area on Aging Agency in your state or county. I usually use Google as my search engine of choice so this example is what I got using Google. You can enter the search term "Area on Aging Agency San Francisco" for example and you'll receive information on the agency in San Fransisco along with an number of similar sources. Plug in the name of your local area and see what you get.  Then search their site for the kinds of resources you need.

Another good search term is "caregiver resources _______" Fill in the blank with your city or county and see what comes up.  Search their sites and contact the sources to find help with additional resources in your location.

Start a file folder and keep copies of the information or write down the web addresses of the places you've found helpful. 

Johns Hopkins' Nurse Makes a Difference for the Aging

The population continues to age because we have better health care and more interventions to help keep the elderly safe as well as healthy. This also presents many new challenges each day to keep this population safe and as independent as possible. An associate nursing professor at Johns Hopkins' University School of Nursing has made a difference in Baltimore, MD with a pilot program.

If your aging parents or spouse needs some suggestions for safer living, contact the PCP (primary care practitioner) to discuss the possibility of a home health safety evaluation.  A visiting nurse, PT, OT and Medical Social Worker can be made available to assess their needs to keep them safe and as independent as possible in their own home. This service is paid through Medicare as long as there is a skilled need and the physician orders the evaluation. The skilled need can be issues such as a fall risk, safety with performing activities of daily living, taking medications appropriately, and pain control.


Image:Microsoft.com

Resist the Urge to Control -- Help Aging Parents Stay Independent

We have become a generation dependent on instant gratification and quick fixes. In general, we often have little patience and lack the coping skills to handle things that we cannot control.

So as we face issues with aging parents, spouses or other loved ones, we find ourselves in very unfamiliar territory and many times panic sets in as we realize we have to do something, but we can’t fix it.

The first thing to do is to RELAX and get a grip. No, you won’t be able to fix this and it’s not going to go away. Take a deep breath. You are going to find yourself on the wildest never ending, emotional roller coaster ride. And like any roller coaster worth its price to ride, it’s going to have steep slow climbs, sharp rapid drops, a few deceiving plateaus, and a bunch of slow bumpy ups and downs. Unlike the amusement park, you can’t get off. This one loops around and around.

The next thing to remember is that you are not going to become the parent. It may seem that way, but your role is actually to assist and guide them through the rest of their life. It might see easier if you just take over and do it for them, but this is not in their best interest.

Independence is Essential 
The key point is to make it possible for them to remain as independent as possible for as long as they can. You need to do things to “aging” proof the house.

Reacher can help keep aging parents safe

• Put up grab bars in the bathroom, and maybe a few in the hallway or strategically throughout the house to help them safely navigate.
• Clear away clutter. They seem to love to pile up newspapers and magazine that they insist they will read someday. Move them out, they are a fire hazard at the very least!
• Get rid of throw rugs and make sure the carpet is flat. Elders don’t pick up their feet as well and tripping is an issue.
• Put reachers throughout the house so they don’t have to bend over to pick up things they drop.

Consider hiring help to perform tasks they can’t or shouldn’t be doing. This does NOT mean 24/7 help!! It also doesn’t mean they need to move to assisted living facilities. A housekeeper to do the laundry and heavy cleaning once or twice a week. A gardener. Someone to assist with grocery shopping once or twice a week. Maybe they need someone to help them bathe a few times a week. A daily phone call to remind them to take medications.

If cooking is an issue, consider solutions such as Meals on Wheels or other food delivery services, gourmet frozen foods, or cook meals and freeze them for them.


What other ADLs do they need help with?

Device to help button shirts

Bathing, ambulating/transfers, toileting, feeding, dressing/grooming? The more help they need, the more help you need to hire. Perhaps a few hours a day. But encourage them to do as much for themselves as is safe and possible. Consider alternative as well such as slip on shoes instead of ties that Dad can’t handle anymore. Assistive devices are available to make any chore easier such as buttoning shirts, opening jars, long shoe horns, sock helpers, etc. Look for ways to help them help themselves BEFORE doing it for them!

Taking over and forcing them to be dependent on you or someone else will not fix the situation. It may cause them to wither and die faster. Be prepared to pick the pieces as they falter and make changes as needed. Crises will happen, and guaranteed they will come at the most inopportune times.

Slow down. Resist the urge to control the situation. Enjoy the last years with your loved ones. Keep them comfortable and safe, but as independent as possible.
photos:Amazon.com

Conflict Resolution Needed Here

One of the most common issues I have dealt with in helping families find ways to care for their aging parents is the conflicts that arise among siblings. It's almost like a time warp taking them back to childhood rivalries. Now it's focused on the parents. As each child struggles with their own guilt and other issues about living far away, not being able to provide the care, the money to assist with care or even just to cope with what's happening, there builds a huge struggle about what the parents need.

Sometimes it's about wanting to be the one in charge, or a need to seem like the big hero, or it's about making sure they're still in the will, or to be the favorite child. What was your childhood like? Which sibling had these same issues as a kid? Yep, deja vu!

Occasionally it's not even reality based. One sibling may seem to think that dad needs total care when indeed, he just needs some occasional supervision, transportation, and some assistance with writing checks (or online bill paying), grocery shopping, and cleaning/laundry. Once he starts to need a little help doesn't mean that he's going to be total care in a few short days!!

Deal with each crisis as it comes along. Each time they will need a little more care for a little longer, and sometimes 24 hour care for short periods of time, but encourage as much independence (as is safe) as soon as possible to keep them strong and active. 

Be alert to subtle signs and signals, and have a plan to make changes as you need to....but don't go overboard at the first signs of decline. The aging process is a long time line.

Here's a great resource to help you cope with some of those conflicts that arise as one sibling or another feels the need to take charge and take unnecessary steps way too early on.

Happy July 4th

Take a little time to enjoy your holiday! Have a Happy & Safe 4th of July!!

What's YOUR Plan?

Yesterday I heard an interview on NPR's Talk of the Nation with Amy Dickinson a syndicated Columnist for the Chicago Tribune (Ask Amy). The topic was How to Talk to Your Parents About Assisted Living. In the course of the conversation she said that she and her sister had a plan. Their plan was that no one in their family would ever get old or frail. I had to laugh.

How many of us have had the same exact plan? And how many of you still do? It's a wonderful plan.....until the crisis hits and it all falls apart in a matter of nano-seconds right before your very eyes.

If we could all be healthy and strong and age gracefully and just go to sleep one night and not wake up. we would never be a burden, never have to lose our independence, never have to rely on someone else to help us with each and every one of our ADLs. But that happens once in a million.

The reality is that you can have this as your plan, but you've got to have a Plan B for when it all falls apart. It's kind of like dreading having the sex talk with your kids. It's something you MUST do and the sooner you get to it, the easier things will be for the next one. Because it doesn't end with just one talk. Neither does dealing with your aging parents.

Getting started talking is the hard part, from there it will get easier even if they are the most stubborn and resistant people on the face of the earth! Plan a family gathering and plot with your siblings, children and other significant helpers to make it about talking to Mom and Dad. And if you can do it long before it becomes a reality.... you'll have some ideas of what will work and what's going to be impossible. Heck, they might even surprise you....

Refer to Chapter 2 in my book, The Everything Guide to Caring for Aging Parents, for some hints about how to get started, and how to see things from their side first.

Don't put it off.... start making a plan today.

Caregiving When You Just Want to Run...

It’s one thing when you have a loving relationship with your elder, or at least get along with them. But what happens when you’re faced with having to face the cruel reality of caring for an aging parent who was an alcoholic or substance abuser, or an absent or abusive parent?

There are legal systems in place to assist you with this process. You can make your parent a ward of the court and grant the court guardianship or conservatorship over your elder so they can take charge in matters necessitating decisions that your elder is no longer capable of making. However, be aware that there can be some issues such as decisions about end-of-life care (i.e. Advanced Directives and a DNR) that the court will not make and in some cases may not be able to honor. This will vary from state to state.

If your parent has developed dementia, you may find that they are a very different person; perhaps much more mellow and even kind. If placed in an environment where substances are no longer accessible, the substance abusers will become sober. This doesn’t change or wipe away the memories, but it can make the situation more workable and less stressful for you.

One thing to understand is that whoever your parent was before, the person that the facility will come to know, and perhaps love, is a very different person. This is true for those who have had loving relationships with their parents or elders as well.

The son or daughter who can stand back and let their parent have a happy last few months or years in a setting where their past doesn’t count deserve recognition for their efforts. In hospice, we see this far more often than one might think. In offering support and condolences at the passing of the loved one, we’re quick to say that memories will comfort you, but in these cases it just isn’t so. Yet acknowledging the fact that they were able to make this possible for their parent should be valued. It’s not easy for any of us.

Resources:
www.seniorlegalhotline.org/pdf/conserv.pdf

www.expertlaw.com/library/estate.../conservatorship.html

Why the Obsession with the Bowels?!

Does every conversation with your elders involve the state of their bowels? Listen in on the conversations with their friends and you'll find out more than you ever wanted to know about them as well.
Why oh why do they obsess? And then they eat too many prunes or take to many laxatives and end up with diarrhea! They need to understand that as they age and the body slows down, so will the everyday functions. They may not need to go every day and they can cause more problems than good with the laxatives. Fiber can turn to cement if they don't drink liquids. Read more...

I also have a discussion about this issue in my book.... The Everything Guide to Caring for Aging Parents.... click on the link in the sidebar to purchase a copy.

Happy Valentines Day & Chinese New Year's

Wishing all of you a very Happy Valentine's Day! Feb. 14th this year also marks the beginning of the fifteen day Chinese New Year celebration. It's the Year of the Tiger now. Enjoy!

Hospice Care for Alzheimer's and Dementia Patients

Did you know that your elder with Alzheimer's or other specific end-stage dementia could qualify for hospice care? Medicare has established hospice guidelines for end-of-life care for patients who have entered a terminal phase of dementia or any other terminal disease.

In the last and most challenging stages of dementia, caregivers can get support through hospice. It is paid through Medicare, as well as most private health insurances for those under 65 who qualify. Intermittent visits from nurses, hospice physicians, health aides, medical social workers, spiritual counselors and trained volunteers can help to reduce the burden of care giving. However, hospice is not meant to be a caregiver substitute.

If your elder has shown a decline in health status such as 10% weight loss in the last six months, is now dependent in at least 2-3 ADLs (the more the better), cannot converse effectively (speaks less than 6 words), is incontinent of urine and stool, and in the last 6 mos. has had a severe health issue such as an infection (urinary sepsis, aspiration pneumonia), stage III or IV bedsores, has lost greater than 10% of their normal body weight, or has had an exacerbation of a co-morbid illness, or recent hospitalization for Urinary Sepsis or Pneumonia, they may qualify for hospice care. Note that Alzheimer's can take 10 years to reach the terminal stage and hospice care is designed solely for the end stage.

The primary care physician has to certify that they have 6 months or less to live. (They can live past six months and as long as they don't show improvement, but rather continue to decline at a slow and steady rate, they will most likely qualify to continue hospice care until they pass away. Please note that some patients will improve substantially under hospice care and be discharged until they once again have a true terminal trajectory.)

Hospice care can help to palliatively control and help prevent issues such as hallucinations and behavior problems like "sundowners," calling out, or yelling at night, and infections from such sources such as the bladder, skin breakdown, incontinence, and aspiration. Any pain and respiratory distress can also be controlled to make for an improved quality of life and  peaceful passing. The earlier the hospice can get involved during the end stages, the better the chances for controlling these issues.

Although end-stage dementia patients will most likely not benefit from most of the emotional and spiritual support that hospice can provide, the caregivers and family members should be able to enjoy this benefit at the time when they can be in the most need of this support.

The hospice agency can assess and help determine if your loved one is eligible for hospice care. An order for a hospice evaluation is needed from the primary care physician. If your loved one is not quite yet eligible for hospice care, the hospice may be able refer to home health or to palliative care until they do meet criteria.

If your loved one is on a managed Medicare aka Medicare Advantage program, they will revert to regular Medicare for the hospice care. If they need medical care for a non-hospice related issue, the managed care remains in effect for this treatment. The hospice agency can explain this.

Don't overlook this valuable resource option. Talk to the physician and arrange for a hospice evaluation. Find an accredited hospice through the National Association for Home Care and Hospice (NAHC) or the National Hospice and Palliative Care Organization (NHPCO).

Is it Time to Consider Hospice?

When your aging parent reaches a point at which he/she seems to be declining and not able to bounce back, it may be time to consider palliative care. Perhaps hospice is an option. Talk with the primary care practitioner and see if a hospice eval can be arranged. Hospice care can help all of you ease into the next phase and maintain a good quality of life and eventually achieve a peaceful passing for your loved one, with dignity and without pain or discomfort.

If your elder doesn't yet meet hospice criteria, the hospice nurse may be able to recommend other options such as home health care. Perhaps some PT to strengthen muscles and increase safety would be advised, or an OT eval for some assistance with energy conservation techniques.