Tender Loving Eldercare» My Caregiving Journey

What Do Caregiving and an Empty Nest Have in Common?

Linda Abbit — Mon, 11 Jul 2011 12:00:11 +0000

Getting married and becoming a spouse.

Giving birth and becoming a parent.

Watching your adult children move away and becoming an empty nester.

Seeing your parents age and becoming a family caregiver. (Then doing it again possibly for your spouse.)

These are all major life transitions that schools don’t give classes in! Most of us never have the opportunity to learn the basic how-to’s about these long-lasting roles and responsibilities we take on during our lives.

I’ve been dealing with Empty Nest Syndrome

I haven’t written a new post here in what felt like a few weeks, but I see it’s already been six weeks! I apologize for my absence, but I’ve been wrapped up in my own family situation. I needed time away from TLeC to deal with and process this life transition. However, I’m back again to help and support all of you family caregivers and dedicated readers of my blog.

To further explain . . . .

Our son graduated from college in the middle of May and came home shortly thereafter for a few weeks of vacation before moving out-of-state to start his first “real” job. My world changed very rapidly and deeply. And while I knew intellectually it was all normal and good, I crumbled inside. I thought I had already come to terms completely with having an empty nest when he went off to college. NOT!! I was a weeping wreck of a mom for over a month!

How does becoming an Empty Nest-er relate to caregiving?

The transitions of becoming an empty nest-er and becoming a caregiver share many similarities. I hope the things I learned the past few weeks help you in your life transitions, too.

1. Being caught off guard by, and overwhelmed in, our new roles. Just as I was perfectly aware our son would graduate college and set off into the real world, we see our parents aging, but we don’t really prepare ourselves for the transition to being their caregiver. It’s not just happening to them, it impacts our lives tremendously as well. As family caregivers, our parents will rely more and more on us. As an empty nest-ers, the reverse is true — our children need their parents less and less. Both are the natural order of life.

2. Ideas vs. feelings during transitions. Sure, we all talk a good game about how we’re dealing with our parents aging process in practical terms, but aren’t we hurting inside? Doesn’t it make your heart ache to see your parents, whom you always thought of as strong individuals, showing signs of physical and/or cognitive decline? Isn’t it scary for you to watch them becoming more frail, and worry about what’s ahead for them? Isn’t it upsetting to think about their ultimate deaths? Even if you’re pro-active and have care plans in place before they’re needed, I don’t think you can stop these underlying difficult feelings — not if you’re human.

3. The importance of self-care. First off, acknowledge you’re in a funk and give yourself permission to be in one. It’s OK to feel sad and blue for a few days or even a few weeks during life transitions, but don’t fall into a huge depression you can’t pull yourself out of. What are you doing to get yourself out of the doldrums and back to normal? Are you talking with others you know who have already gone through this transition? Are you doing things to increase your positive thinking and outlook, such as reading books or blogs, journaling or writing positive affirmations to repeat each day, meditating, doing yoga, or getting some exercise? Are you talking with either a spiritual leader or a medical professional if they offer you comfort, advice and more? Are you finding activities (either volunteer or paid) to get yourself out of the house and busy again? What are you doing to pamper yourself and pat yourself on the back for doing a good job as a family caregiver?

4. Keep looking forward. Be aware of what future life transitions lie ahead for you. Read this post again and try to prepare for what’s coming emotionally so you’re not taken by surprise as I was when the Empty Nest syndrome hit me like a ton of bricks. If you’re currently a family caregiver, what will you do when your parent(s) pass away? Think about it. Yes, it’s OK to grieve, but after that, what will fill up your time . . . and your heart?

Life transitions aren’t easy but we manage to get through them somehow. We all need to lean on each other more, and ask for help when we feel we need it — from loved ones, friends, and/or medical professionals. We are all in this life and world together!

Have you been through a life transition recently? How did you cope?

And flip that question around — Is there someone in your world who is going through a hard transition time and would appreciate your help and support? Reach out to them today.

Please share your experience in the Comments section below.

No related posts.

How to Handle the Guilt of Caregiving — Part 2

Linda Abbit — Mon, 23 May 2011 09:00:45 +0000

This post is part of a two-part series. Click here to read Part 1.

I feel a little guilty for writing about guilt.

I haven’t been a hands-on family caregiver for over two years, but I still feel guilt over things I could have or should have done for my aging parents. So can I really offer advice to you about how to best handle guilt?

One thing I will say with 100% certainty is that feelings of guilt can be controlled, and may dissipate greatly over time, but these feelings probably won’t ever go away completely.

Placement Guilt

Feeling guilt over placing a loved one in a care facility when you, a family caregiver, can no longer care for them at home is one of the most common causes of guilt, so I’m going to focus on this issue first.

When placement guilt rears its head, look back and recall the living situation in your home before you placed your loved one. Stop and answer the following questions honestly. (Warning: It’s easy to idealize your “before” life, but don’t. Be brutally honest with yourself.)

About Your Loved One:

Were you able to care for him/her on your own 100% of the time?

Was he/she cooperative in the care you were giving? Or were they stubborn and/or combative at times?

Were they really safe from possible falls or injury at home? Could they be left home alone safely?

Were they accepting of outside caregivers you were bringing in to the home to help you?

About Yourself:

How was your physical and emotional health before placement? Was it deteriorating?

How stressed and worried were you then?

Did your life seem like it was spinning out of control?

Were you able to get a good night’s sleep? Any sleep?

Were you eating well?

Were you able to get a break from caregiving — enough to feel relaxed and refreshed upon your return?

Were you trying so hard to preserve your loved one’s dignity or the status quo of your family life, you were nearly killing yourself in the process?

Did you sometimes feel you were at the end of your rope?

Were you ashamed to admit you couldn’t care for him/her all on your own any longer?

Did you feel like you were failing your loved one, yourself or your family?

My experience says that if you honestly answer the above questions — and not paint a false rosy picture of what your home life used to be like, you will be free of guilt feelings by the time you’ve read to this paragraph. The safety and care of your loved one, as well as your health and peace of mind have got to be better now than the situation was in your home before placement — or you wouldn’t have moved him or her in the first place!

So, when those guilt feelings start creeping in, come back to this post, answer these questions again and remember what life really was like before you made that difficult placement decision. It may not take the sadness or loneliness away, but it should lessen the guilt quite a lot when you re-confirm the decision you made truly was best for both of you!

How I Overcame My Own Guilt

An example from my life illustrates how I handle the guilt I still feel because my father died alone. I was not at his bedside as I had hoped and wanted so very much. The exact circumstances about his death don’t really matter, just know that the guilt over this bothered me very much initially, and even now, six years later comes back to haunt me on occasion.

The hospice company that cared for both of my parents keeps in touch with bereaved families for one year following the patient’s death. I received various mailings and phone calls during the year after my dad died, but never took them up on their services of counseling, religious services, or holiday memorial events. Just before the hospice service was ending, I decided to make an appointment with the hospice social worker for a one-on-one session.

I sat there crying and told her of the tremendous guilt I felt about my dad dying alone. I had been with him so much over the last several years of his life and the three months he was on hospice, how could that have happened?! I was feeling like I’d let him down completely by not being there.

What I learned from her was that death is a very private experience, and that many people “choose” to die alone! She told me how many families will be at their loved one’s bedside, and then right after they leave to either get some sleep or some food, the person passes away while they’re gone. As she relayed this to me, I had to admit I had heard of this happening to other families I knew.

In my case, education helped me decrease my guilt. And when I think about my dad dying alone and the guilt begins to resurface, I remind myself that it could have been what he actually wanted.

What other things have you felt guilt over as a family caregiver? How have you overcome those feelings? Your thoughts are welcome in the Comments section below.

—————————————————————

Photo Credit: Jason Rosenberg on Flickr

How to Handle the Guilt of Caregiving — Part 1

Linda Abbit — Wed, 11 May 2011 09:00:30 +0000

One of my support group members recently asked me, “How do I get over the guilt?”

A few months ago she moved her husband to a board and care facility because she could no longer care for him by herself at home. Intellectually she knows it is the best thing for both of them, but the guilt gnaws at her.

Even though my parents died over two years ago, I still find myself thinking thoughts such as, “I wish I hadn’t listened to So-and-So about that particular decision and followed my gut instincts instead.”

The guilt hits me from time to time –

Why didn’t I make different (better?) decisions.

I wish I could have made their final years more pleasant.

I wish I had a magic wand and could have reversed their aging with a wave of my wand.

If I only had the power to do so!

Guilt is an inherent part of caregiving. What guilty thoughts do you deal with? And what do you do when it rears its ugly head?

I’d like to read your thoughts in the Comments below and I will share in a new post what I did (and still do) to combat guilt feelings. Thank you for contributing to this discussion.

—————————————————————

Photo credit: kelsey_lovefusionphoto

Sorry Charlie Sheen, This is What #Winning Looks Like

Linda Abbit — Tue, 19 Apr 2011 02:13:35 +0000

I’m very proud and happy to announce that my article, “Daily Activities for Late Stage Alzheimer’s Disease Patients,” has been selected as the winning entry in The Great Alzheimer’s Blogging Competition run by The Disabled Shop Blog!

These are the flattering comments the judge wrote about my post:

An excellent blog – Linda identified a need for more information about caring for someone with dementia in the later stages and answered that need with a compassionate and revealing blog. It strikes a great balance between practical advice, realism and a touching personal account of how dementia fundamentally affects a person. This is a brilliant post.

Please also take time to read the other contest entries while you’re over at The Disabled Shop Blog. They each share different and important perspectives about this horrible disease.

My greatest wish is that a cure will be found soon so that no more families have to live with this progressive and debilitating disease.

Shameless Plug :-)

Please remember you can hire me to write for your blog, business or organization. Click on the Writing & Editing Services link above for further info. Thanks!

Daily Activities for Late Stage Alzheimer’s Disease Patients

Linda Abbit — Thu, 31 Mar 2011 00:35:29 +0000

[This post is an entry for the Alzheimer's Research Blogging Competition at The Disabled Blog Shop. The deadline to enter is March 31, 2011 so there's still time to get your entry in. Please read how to enter here. You can help raise awareness of this horrible disease plus raise money for a great cause. Let's work together to find a cure!]

A Little Background

My mother lived with Alzheimer’s disease (AD) for over ten years. In the early stages, I was a long-distance caregiver, mainly providing information and support for my father who was her primary caregiver. As time passed and the disease progressed, I provided more hands-on assistance for both of them, and then became her sole family caregiver after my father passed away in 2005.

There is much written about how to interact with Alzheimer’s patients in the early and middle stages, but it’s more difficult to find information for caregiving in the later stage of the disease when the patients’ abilities have severely declined. I “winged it” in some ways as my mom reached the late stage, relying mainly on my instincts and what I thought I would like done if I was in her shoes as an AD patient.

Some think that because a patient’s abilities to think, remember and even speak decline greatly, there is no longer a “real person” in there looking out. I never agreed with that perspective and continued to operate as if my mom was a full participant in our activities. Even if she didn’t remember the activity minutes after she experienced it, I chose to believe that while she was immersed in it, it created a better quality of life for her. I realize that some would say I’m an eternal optimist, but a whole lot of good and very little (if any) harm comes from this thinking and the resulting actions.

Our “Activities To Do” List

I observed my mom’s abilities (or lack thereof) carefully, and also relied on what I knew her interests and hobbies were during her lifetime to create quality times we could share together. Here are some of the things I did with my mother while she was in the late stages of Alzheimer’s disease:

Nature Walks. I took her for walks to the park in her wheelchair when the weather allowed. She couldn’t walk or speak, but as I pushed her around the park near her home, I could see her eyes taking in all the surroundings. The sunshine on her face and body, seeing the tress and flowers, watching the children play on the swings and playground equipment — each of these sensory experiences would bring a definite, albeit passing, smile to her face. She’d always had a “green thumb” and could make anything grow, so I believe the park with its seasonal changes was an environment she definitely enjoyed.

Arts and crafts. OK, she really couldn’t do even the most basic arts and crafts projects in the late stages of Alzheimer’s disease, so I would do them for her. While I was creating a collage from magazine clippings, felt, buttons and other odds & ends, she would watch attentively, often reaching out to hold the raw materials I would be working with. {Note: I was always on guard to make sure none of these materials ended up in her mouth!}. When I would draw or color, she held on to a crayon or marker. She couldn’t use it, but she would still grasp it in her hand as she sat next to me at the kitchen table. She was a Girl Scout leader who did arts and crafts projects with our troop and at home with me, loved oil painting, all needle crafts and was a fabulous seamstress, too!

Magazines and Photo Albums. My mom was always an avid photographer; not in the professional sense, but as a recorder of family events, trips, and special times of our lives. So I would plop a family photo album in her lap and she would slowly look through and turn the pages, often stroking the photos lightly. I would talk at her (since holding a two-way conversation was impossible) about the people and scenes before her, even if she didn’t remember who the people were. You may think I’m dreaming, but I truly believe she was taking in my words and absorbing the images before her. The same activity prevailed with magazines I’d bring — “Better Homes & Gardens” and “Woman’s Day” were always her favorites, before and after she was diagnosed. Decorating and antique hunting were other life-long hobbies of hers, and those magazines may have somehow been fulfilling that which she could no longer do.

Story time. She instilled a love of reading in me from early on, and I read to her until close to her last day on earth. I think she cherished the books I’d share with her. Even when she couldn’t read the words, she still enjoyed the photographs and illustrations in books. I bought an over-sized coffee table book filled with huge, detailed photographs of flowers that she looked at until the book fell apart. I also read to her like she did to me. And when her comprehension of what I was reading disappeared, I switched to children’s books, such as “Horton Hatches the Egg” by Dr. Seuss, “Caps for Sale” by Esphyr Slobodkina and “Goodnight Moon” by Margaret Wise Brown. Sometimes she’d look at me with an amused expression that seemed to say, “Why are you reading this little kid’s book to me?” But then she’d fix her eyes on the pages and never closed the book nor stopped me from reading it to her.

Music. I know my parents both loved music! We had a piano in our home, they took me to Broadway musicals starting when I was in elementary school, and they often had records playing to sing along with. Again, we were not close to being music professionals, but I knew music was valued highly in our family. I would bring CD’s over to play for her based on what holiday was coming up or around a theme, such as patriotic songs, Big Band music or favorite musicals. We’d listen and I’d sing along. Her eyes would simply sparkle during music sessions together. I would also sing lullabies to her that she had sung to me as a child.

I believe in my heart of hearts that she got joy from the various activities we’d “do together,” and the quality of both of our lives was vastly improved by sharing them — even if they felt somewhat one-directional on my part at times. I wouldn’t have missed these experiences for anything!

If your parent, friend or relative has AD or dementia of any kind, why don’t you try the above ideas or variations on them? Or, come up with different activities based on your unique knowledge of your loved one’s level of functioning and interests.

Take-aways from my Story

Being a family caregiver has heartache in it, but also love-filled and special moments if you keep your eyes and mind open to the possibilities. Please don’t think that because a loved one’s abilities decline as a result of Alzheimer’s disease or dementia they can’t continue living a life filled with sensory richness and beauty each and every day!

No related posts.

Six Reasons to Join a Family Caregivers Support Group

Linda Abbit — Mon, 28 Feb 2011 09:00:33 +0000

I am a huge proponent of support groups because I’ve learned so much and received comfort by attending them over the past 15 years. For the last three years I’ve also been a support group leader, and my life is enriched by listening to the people who attend my groups each month.

My first support group experience was in 1996 when I became a member of a breast cancer survivors’ support group. Shortly after I was diagnosed with breast cancer, I started going to meetings, asking questions, and listening carefully to the survivors there. They gave me knowledge, different perspectives, and lots of hope. The experiences these women shared were very valuable, and helped me make decisions about what treatment options to select.

The next support group I attended was with my father in 2001 and it was for spouses of Alzheimer disease patients. I went because I thought he’d get something out of it, plus I thought I’d learn something too. But, just like many men of the older generation, he didn’t care for the experience, and we stopped going after several meetings. I still felt I could use a support group as my mom’s disease progressed, so I found and went to one specifically geared for adult children of Alzheimer’s disease patients. There really are support groups that exist for nearly every challenge people face!

Six Reasons for Joining a Support Group

Education: Whatever the support group topic is, the leader (sometimes called the facilitator) will be knowledgeable about it. They should also be ready, willing and able to research questions they might not have the answer for immediately and get the answers to you after the meeting via phone or email. Alternatively, they can report back to the whole group at the next meeting. The other members will share their own caregiving experiences and knowledge, too.
Empathy: This is one of the best reasons to attend a caregiving support group! It’s very common when facing any problem or obstacle to feel that we’re alone or that no one understands what we’re going through. NOT!! And a support group illustrates this in spades. All of the members, as well as the leader, are in the midst of caregiving. You can let it all hang out with people going through something similar to what you are experiencing. They truly understand your ups and downs.
Brainstorming: A good support group leader encourages members to help each other, and brainstorming is a great way to do this. When someone mentions a challenge they are facing, it’s beneficial to get tips, strategies and new ideas on how to deal with whatever you are having a hard time with. At one meeting, we used role playing to help members prepare in advance for difficult talks they will be having with their care recipients.
Resources: Often a support group leader and its members will be familiar with, and recommend, other community resources that can assist you in multiple ways. No one person can possibly know all of the local caregiving service providers out there — and more are starting up every day. It’s also good to hear other people’s feedback on services they’ve used, both pros and cons.
Friendship: I’ve seen support group members connect during meetings, and then exchange phone numbers to keep in touch between meetings. Often members who live in close proximity start carpooling to meetings and/or going out for coffee or a meal afterwards to continue the discussion . . . or just have some fun! Some caregivers in my support group have started a respite cooperative between them. They take turns watching the other person’s care recipient so the member gets a break or can run some errands, etc. It’s like a babysitting cooperative, but for caregivers. Making long-lasting friendships was an added and unexpected bonus I received when I joined my first support group back in 1996! Priceless.
Paying it forward: Many times people continue to attend a support group even after their issue/health concern/stage of life is over or resolved. ”Veterans” have lots of good information and life experiences to share with newcomers in any support group. As a leader, I value the commitment by these people to help and share with others as other veterans may have done for them. I’ve seen widows, widowers and children come to caregiver support group meetings after their loved ones have passed away to share that very difficult stage of caregiving with the group, and receiving lots of love and caring in return. It provided closure to them, and to us.

Selecting a Support Group

It is smart to “shop” for a support group that you feel comfortable with, from the physical setting, to the demographic of the membership, to the leader’s style as well as the meeting format. I’ve been in rooms that felt cold and were not a good fit for me. I’ve been to groups that were OK, but not great. There is a support group that is right for you, so keep going to different groups until you find it!

Give a support group meeting more than one chance. I would attend at least two meetings before I crossed a group off my “potential” list. You want to be sure your first impression was valid, even if it wasn’t necessarily a positive one. What’s an extra hour of your life when it could lead to a great long-term experience if given another chance? Other people find they enjoy going to multiple support groups regularly because each one offers something different than another — which is also an excellent strategy!

Don’t feel you have to go to every meeting to gain value from the group. My attendance at the adult children of Alzheimer’s disease patients support group went in waves. There were months I couldn’t wait to go, but then my mom’s cognitive decline would reach a certain level, things were at an even keel, and I wouldn’t attend a meeting for a month or two because I didn’t feel I had any pressing questions or issues. I returned again when the need arose.

Support Groups Online vs. In Real Life?

I’ve been involved in a different online communities and online forums since 2006. While getting to “know” people from all over the world online is certainly fun and gratifying, I’ve learned the best part of these connections is meeting the people in person! There is still something about face-to-face communication that has online interactions beat by a mile! This goes for support groups, too.

Plus, you can’t hug someone online, and hugs are an important aspect of many support groups! And especially as caregivers, we can always use more hugs! :-) For that reason (Hugs are #7) and all those given above, I hope you’ll attend a support group meeting for caregivers in the near future!

Have you been to a caregiver support group? Support groups for other issues? Are you a regular member of one? What have you gained through participating in them? Please share your experience with us in the comments section below.

————————————————-

Photo Credit: Dee-lite’s photostream

“I” is for Interview at EldercareABC

Linda Abbit — Mon, 15 Mar 2010 14:22:11 +0000

It is with deep appreciation and honor that I ask you to join me today over at the EldercareABC website. EldercareABC is a wonderful community for caregivers, created by caregivers, and one that I respect greatly and enjoy visiting.

Mary Nix is a woman whom I interviewed in 2009 about her caregiving experiences, and she has graciously asked me to share my viewpoint about caring for aging parents on her EldercareABC blog.

You can also check out some other posts while you’re there, such as:

Protection from Financial Elder Abuse

The Upside to Elderly Home Care

Or subscribe to their RSS feed so you won’t miss any of the excellent information and resources they provide to caregivers.

The “ABC” in EldercareABC stands for “About Being Connected.” Thank you to Mary and the EldercareABC Team for giving me the opportunity to connect with you and your readers. And please continue doing the great work I consistently find there and assisting caregivers in such a supportive way!

True Confessions: When I Lost Patience with My Aging Parents

Linda Abbit — Mon, 25 Jan 2010 09:00:34 +0000

In a prior post I acknowledged that in our role as family caregivers, we’ve all probably lost our patience with our aging parents or care recipients at some point. I also promised to share with you my own experience, so here goes.

I Never Lost My Patience (Part One of Two)

I was a long distance caregiver to my parents during the years my mom was in the early stages of Alzheimer’s disease. It’s easy to keep your patience when you live three thousand miles away and the caregiving consists mainly of supportive phone calls and a few short visits a year.

About two years after her diagnosis, when my parents moved to an assisted living facility in my town, my mom was at the start of the middle stage of this horrible disease. Through the excellent free resources of my local Alzheimer’s Association, I had educated myself via workshops and lots of reading about caregiving for dementia patients. I was also attending a support group for adult children of Alzheimer’s patients on a regular basis which provided more insight and other people to share experiences with.

The knowledge I gained from the time my mom was diagnosed until the time she and my dad moved here armed me with an understanding and deep compassion for people struck by any memory-impairing disease. And while I saw my parents multiple times a week once they lived nearby, I do not remember a single time when I lost patience and blew up at either one or them, face-to-face or by phone. (I just checked with my husband and he couldn’t think of any incidences like that either.)

So How Did I Keep from Losing It?

OK, this was probably a wimpy way out (or at best, passive-aggressive behavior), but I would rely completely on my husband to interact with my parents for me when I needed some space as a caregiver. As their only child, I was their sole source of emotional support, and I thought it could be extremely hurtful if I was nasty, mean or rude to them. I truly didn’t want to hurt them in any way at this stage in their lives.

I did two things that stopped me from losing patience with my parents:

1. I vented to my husband . . . a lot! I would whine and complain whenever I felt the caregiving issues and duties were overwhelming me. As an only child, one comment I often made was, “This is just too much for one person to handle!” (Of course, there are pros and cons about being a caregiver and an only child, but that’s another post.)

I must also point out, my parents were always very independent and considerate! They never expressed a desire to live with my family and only did so for a few weeks when they were moving. I always had our own home as my sanctuary to retreat to. I don’t know how I would have managed had we all lived under the same roof — which makes me sympathize even more with family caregivers who do accomplish this incredible feat with aplomb!

2. I would have my husband “run interference” for me when I was reaching my caregiving breaking point. Jeff is an absolutely extraordinary man, and I have to publicly thank him again for being such a vital part of my caregiving “village.” There were times my father would call and I just couldn’t bear to deal with whatever question or problem they had. Jeff would return the call and handle everything for me when I just couldn’t do it myself.

One particular incident really stands out in my mind. I had just arrived at Disneyland to meet a group of friends (we’re locals and had an annual pass at the time) and spend the evening dancing to a favorite band playing there. (As I’ve written here before, dance is one of my major ways to relieve stress!) My pager beeped and I saw it was my parents’ phone number. I immediately called Jeff at home and he willingly returned my Dad’s phone call, explained I was gone for the evening, and helped them in my absence. Thankfully, I didn’t have to turn around and leave the Happiest Place on Earth as soon as I had arrived. I know how lucky I am to have had such a reliable and caring backup person on my caregiving team.

Do you have a family member, friend or neighbor you can ask to be your back up for those times you just need to have some time away from caregiving? And don’t feel guilty arranging for this assistance!

I Never Lost my Patience . . . Yeah, Right (Part Two of Two)

Ironically, I would lose my patience on the telephone multiple times with my parents years before I ever became their family caregiver!

I moved out to California in my mid-20′s and we’d talk on the phone about once a week to catch up. I would find myself very upset or angry with my parents by the end of many conversations. I remember wishing they would just leave me alone and stop telling me what to do!

These negative emotions, along with some other issues, led me to get counseling for a few months to gain a better understanding of myself. My therapist taught me a very important life lesson which I know helped me become a more patient caregiver when I took on that role.

The lesson was for me to change my perception of what they said.

It was to recognize that the words my parents were actually saying, which I perceived as criticism or telling me how to run my life, were only one surface layer. What I needed to learn and embrace 100% was the understanding that beneath whatever “negative” words I was hearing, what my parents were really saying to me was, “We love you!”

They cared about and loved me deeply. They weren’t criticizing me; they were suggesting ways I could make my life even better. It was all in my perception of the intent behind their words, not what their words were! It was the unspoken message they were sending that I needed to focus on.

Once I learned this important lesson, it made all the difference in the world when communicating with them in a patient and loving manner, both long distance and while up close and personal. And I think this basic understanding also kept me from losing patience with them when I later shouldered the responsibility and stress of caregiving.

True Confessions are now officially over.

In a future post, we’ll talk about practical ways we can smooth things over when we do blow our cool with our Golden Oldies.

Hospice Care, Part 4: Mom’s Hospice Experience

Linda Abbit — Mon, 19 Oct 2009 09:00:30 +0000

This article is Part 4 in a series on hospice care. Please see the section below entitled “Related Posts” for links to Parts 1, 2, and 3 and to read more on this topic.

First Time Around It Was “No Go”

I was impressed with the way my dad’s final months were made more comfortable physically and emotionally via hospice care, as well as by the support I received from them. I wanted my mother to receive this same comfort care. She was already in the middle stages of Alzheimer’s disease when my dad passed away, and I knew I really didn’t want to subject her to any more hospital stays in her lifetime, so placing her on hospice care was the answer for me.

I asked the hospice company to assess her, assuming they’d admit her to their service. Wrong! The hospice company told me she didn’t meet the strict criteria for admittance as a patient. In one way I was glad that she didn’t qualify for hospice but, on the other hand, I was somewhat surprised and let down. While disappointed, I learned their parameters, and also knew it was only going to be a matter of time before she would meet the criteria. And in April of 2007, she did.

A Different Experience Due to Length of Time on Hospice

The difference between my mom’s and dad’s hospice experiences was due for the most part to the length of time they each received hospice care. It was provided by the same hospice company, but my father was on hospice less than six months, while my mother was on hospice for approximately two years.

As a result of her extended time on hospice and her continuing decline, she utilized these additional services:

The hospice company provided more medical equipment for my mom: a hospital bed with an alternating pressure air mattress, a wheelchair, incontinence supplies, and a medical hoist to help the caregivers lift her from her bed to wheelchair and back again.

The hospice company consulted with wound care specialists several times who assessed and suggested alternative treatments for the bedsores that appeared despite the excellent care she received. (Yes, bedsores can develop even when patients are very well-cared for. Read more about this subject here.)

A dedicated hospice volunteer visited my mom once a week and helped my mom participate in arts & crafts or music as much as she could, read books to her, talked with her (even though it was pretty one-sided due to mom’s aphasia), brought flowers and little gifts, and just kept her company if she was sleeping. These “quality time” visits were greatly appreciated by me, since I couldn’t be there every day. The volunteer also got to know our whole family and we still are in touch months after my mom passed away.

When my mom experienced her first ever tonic-clonic seizure, continuous care was provided by hospice for about the next 48 hours. This means hospice staffers gave her intense around-the-clock care until she returned to “normal.” This was only offered by hospice as a short term level of care and reevaluated each day, because it is also based on strict Medicare guidelines.

Caregivers vs. Hospice Staff in “Territorial Wars”

An interesting thing occurred during the treatment of my mom’s bedsores. The board & care caregivers and the hospice RN’s pointed fingers at each other a few times, insinuating that it was the others’ fault that my mom’s bedsores weren’t healing quickly enough. The caregivers felt the RN’s needed to provide more frequent wound care; while the hospice RN’s felt that the in-home caregivers didn’t turn or reposition my mom often enough since she was bedridden. It was subtle verbal warfare that I heard both sides of. Although it didn’t became a big brouhaha, and never went further than a few words spoken privately to me on occasion.

It’s important the staff of the board & care and the hospice nurses easily co-exist and communicate well with each other. And they should not get into “territorial” wars over who the patient is getting “better” care from. I knew they all wanted what was best for my mom, but they needed to stay focused on that and not start pointing fingers out of their frustrations over the bedsores.

If you notice this phenomena occurring during your loved one’s care and it’s getting to be more than you want to deal with, contact the hospice team manager and/or board & care administrator and let them get it ironed out. With mom’s medical condition I believe her bedsores were lingering for any number of reasons, and I never blamed the caregivers nthe RN’s. All of us were a “village” providing the best care possible for my mom. Your family could find themselves in the middle of staff turf wars, too, over various caregiving issues, so please be aware.

More Lessons Learned from The Two Hospice Experiences

As I wrote previously, I might have interviewed other hospice companies if I had known in the beginning there were different types to choose from. Some time after the first year of my mom’s hospice experience, I decided to interview a smaller “mom and pop” type of hospice company a close friend (who is also an RN) recommended. One benefit was that the nurses’ caseloads with that company were smaller, so their patients theoretically could receive more frequent or longer visits. This benefit appealed to me and I thought over the pro’s and con’s of each company for several weeks.

I decided to stay with our original hospice company. I didn’t want to invest the additional time and energy it would take for a whole new team of hospice workers to get to know and initiate care for my mom. I realized no hospice company is perfect and it just didn’t seem worth it to make a change at that point. It turns out this decision to keep the status quo was just a few months before my mom died, and that fact made it an even better decision in hindsight.

Every hospice patient and their family’s experience depends greatly on the individuals on the hospice staff. Although the doctors, RN’s, social workers and home health aides that cared for my parents were all employed by the same company and therefore had the same goals and philosophy, they each brought their own personality and style to the job. These can vary greatly and the patient’s family should be sure the staff’s style of communicating and caregiving match what you perceive your care recipient’s and your family’s needs are.

For example, the social worker assigned to my dad’s case was a treasure. As I wrote in a prior post, she met me in person at the board & care several times and checked in by phone with me regularly to offer support to us on a continuing basis. When my mom was admitted to hospice two years later, I was pleased to learn the same social worker was assigned to her case. Later on she left the hospice company and the new hospice social worker approached her job very differently.

This new social worker never called to introduce herself nor made any contact with our family until I called the hospice company with a question that fell under her bailiwick. She then promptly met me at my mom’s board & care and provided the needed information, but the “connection” and compassion I felt immediately from the prior social worker was missing. Yes, she technically fulfilled her job duties by efficiently responding to my query, but that was it. She seemed harried and her demeanor just wasn’t a good fit with mine. If I needed more help from the social worker, I would have requested someone else on the hospice staff. Like any paid service, we as consumers have the right to ask that our basic needs be met.

I recommend patients and their families be open to the concept of hospice care. It is a scary word associated with death and hard to face, but it provides a positive end-of-life option. Learn about it. Interview local hospice companies before making a decision on which one to use. Talk with your aging parents about their end-of-life thoughts, plans and desires. Educate your whole family about this phase of life and how hospice can help manage so many facets of it.

I feel very fortunate that both of my parents were able to die with no pain, peacefully and with dignity. I wish everyone could leave this world in that way. Don’t you?

If you or your loved ones have had experience with hospice care, please share with us in the comment section below.

And check back soon for more articles in this series.

Hospice Care, Part 2: Dad’s Hospice Experience

Linda Abbit — Mon, 05 Oct 2009 09:00:38 +0000

Please be aware I am not a health care worker, nor an expert on hospice and end-of-life issues, but I am sharing my family’s hospice experiences with you in the hope it will lead to more knowledge and a greater understanding of this aspect of life.

This is Part 2 in a series on hospice care. You can read Part 1 here.

Admission to Hospice Care

I probably shouldn’t have been surprised when the board & care administrator suggested Dad be evaluated for hospice care. It was just after his 98th birthday after all! While he was in above average shape for someone that old, he had deteriorated physically and mentally in the preceding weeks.

Plus the administrator actually listened to my words and my true but unspoken desires underlying the words I’d said in the months prior: “I don’t want my father to ever be put in a hospital again.”

Why did I feel this way? Two years before I’d witnessed how confused and agitated being in the hospital and medications made him when he had hip replacement surgery. And I didn’t want him to go through that mental angst and the physical discomfort hospital stays usually cause in the elderly.

Not every senior is placed on hospice just because a family member asks for an assessment. A nurse examined and interviewed us both as one part of the admission process to see if my dad met the eligibility guidelines. My dad’s doctor did an examination, as did the doctor affiliated with the hospice company.

Hospice doesn’t pay for all of your loved one’s medications, but it did cover all medications relating to the diagnosis hospice gave him, end stage cardiovascular disease. My father wasn’t taking much medicine at all, so the cost for the non-covered medication wasn’t a financial burden for us.

I eventually saw how much the hospice care bills were, and they were very expensive, but at no out-of-pocket cost to us — except for the monthly Medicare premium taken out of his social security check. Payment for hospice services is covered through Medicare and most Medicaid programs. Most, but not all, private insurance programs offer a hospice benefit. It is important to research whether your health insurance coverage offers hospice benefits and determine exactly which services are included. Some hospice companies will help you with this analysis, too.

I didn’t interview more than one hospice company. I just went with the one that the board & care recommended. I didn’t realize I could have chosen any one I wanted to, but I liked the people I met through this hospice company and my instincts said to proceed with them. I wasn’t disappointed. As time went on and I learned more about hospice, I became aware that all hospice companies are not alike. I happened to select a large, nationwide hospice company, however there are smaller, “Mom and Pop” types of hospice companies as well.

If I was going to do it all again, I might have interviewed more than one company just to get a feel for the various staff members, as well as to compare and contrast their approach to our family’s situation. A hospice company is only as good as its staff makes it. Like any service you are paying for (even if Medicare is picking up the tab in this case), make sure they provide good customer service and you are very satisfied with the patient care. If not, look around until you find a hospice company that is a better “fit” for you and your Golden Oldies.

What Does Hospice Do When Your Loved One Already Lives in a Board & Care?

Hospice provided another entire layer of care for my dad. There was a wonderful RN who would visit and examine him thoroughly two or three times a week. A home health aide came every other day to bathe, shave and attend to any personal care he needed. This was above and beyond the regular caregivers’ daily assistance in the board and care. The RN would call me with periodic reports by phone about my dad’s condition and I was able to reach her (or her supervisor) whenever I had questions or concerns. There was also a detailed log book about my Dad recording every statistic about his health condition and medicines, contact information, and a detailed report for every visit made by each hospice team member.

Beyond patient care, phone calls were made to me on a regular basis by the hospice social worker, whom I also saw sometimes while visiting my dad. She would call me every few weeks just to check in and see if I had any questions or needed emotional support in any way. The hospice company also had a chaplain who contacted me within a week of my dad’s admittance but I let him know we already had wonderful clergy to help us with religious and spiritual issues. The hospice team (MD, RN, home health aide, social worker, chaplain, team manager) meet on a weekly basis in their offices to discuss each patient and update their care plan.

Hospice Philosophy

The goal of hospice care is to keep your aging parents comfortable and to maintain a decent quality of life while they are in their final stage of life. This philosophy is different than traditional medicine, in which health professionals strive to cure a person’s disease. Hospice services are not intended to speed up or prolong the dying process, but focus instead on relieving pain and other symptoms. Hospice caregivers are concerned with enhancing the quality of remaining life by keeping seniors as alert and comfortable as possible in a familiar environment with family and friends nearby. Hospice care also helps family members manage the practical details and emotional challenges of caring for a dying loved one.

In Part 3 of this series, I’ll share more with you about my family’s experiences with hospice and what I learned during my mom’s final months.

Outside Resources:

The Hospice Foundation of America

Medline Plus about Hospice Care (A service of the U.S. National Library of Medicine and the National Institutes of Health)

American Cancer Society