Tag: mom

49% of Americans Retiring Earlier Than Planned

The latest U.S. Census reports that there are 44.7 million over the age of 65 in the United States. According to the Department of Health & Human Services, seven out of ten of them will need three or more years of long-term care before they die. Unfortunately, most families are not prepared when they need to step in and help mom, dad in the face of a crisis or medical issue, and the consequences of being unprepared can be severe amongst families – causing chaos, confusion, and loss of money.

What’s more, a 2014 survey by the Employee Benefit Research Institute found that 49 percent of retirees surveyed had retired earlier than they had planned. The survey found that many Americans find themselves retiring unexpectedly, and many retirees cited negative reasons for leaving the workforce, including 61 percent who cited health problems or disability.

Conversation Starters

The earlier you start talking about this the better. If you are having the discussion with a parent, always go in respecting the parent/child dynamic even through you may be 60. Consider this a conversation where you are trying to understand how a good friend, and someone you love is planning on spending the rest of their life. Some ways to do this include:

  • Ask mom and dad how they plan on spending their 60s, 70s, and 80s. Where do they want to live and how do they want to spend their time?
  • Request recommendations on how to approach estate planning. When did they do theirs and how did they decide who should be their advocate if one of them is unable to speak for the other?
  • Share a story of a friend or colleague who faced a difficult family health issue and talk about how your family might have handled the situation differently.

Unfortunately, you may have to wait for a pivotal event to happen before mom or dad are ready to have this discussion with you. Let me know if you have some additional suggestions on how to get this conversation started and I hope you will share which ideas helped your family.

For a free guide on how to organize your documents, accounts, and assets so that you can easily find them, or share them with a loved one should they ever need to help you, visit MemoryBanc.com/save.

The Loss of Your Mom Will Just Rattle Your Bones

skeletonI went to find mom some new shirts that could easily fit over her head. We moved a minimal wardrobe with her to the new community back in January, and now find we need some options because what she has hurts to pull over the large lump on her forehead. She got frustrated by the buttons, so we didn’t move many of the blouses and need some options.

I was very excited to find some cotton pullovers with boatnecks that had pockets. My mom likes to have a place to keep her tissues, although up the sleeve is still a popular option. When I’m checking out somehow I come to tell the woman the purchase is for my mom. I didn’t give any more details but she responds with “Love her while she’s here, the loss of your mom will just rattle your bones.”

I want to tell her I know it will, but I also know she did not want to live like this. I still tear up more often than I would have guessed I would over the loss of my dad – and that was a year and a half ago.

Thanks to those of you that commented and sent me notes. It’s encouraging to know that I’m not alone in my thoughts and frustrations and that many have made this journey and survived.

I want to share what Susan, author of My Alzheimer’s Journey, shared with me. She wrote a daughter’s prayer to god last May. So many of her thoughts resounded within me. Thank you Susan.

dear god
please take
my mother
now and
never

I can’t bear to see her
suffer anymore
nor can I bear
to see her go

mothers and daughters
are sometimes
swallowed up
by life god

we push
and pull
and try
to find
our way
to détente

but sometimes god
disease finds
us first and
renders us
unaware

it steals the
things we
hold dear:
thoughts
words
actions
deeds
dignity

what happened
to dignity god?

is it stuffed in your
back pocket
like a forgotten note
with a grocery list
or phone number
scribbled
on it?

go away god
if you can’t
keep track
of the notes
in your pockets

no! wait god!
come back!
i didn’t mean it
i made a mistake

take her now god
all these bits and pieces
and fragments of your daughter
who was once my mother

pluck her quick
from her drug-induced trance
breathe her back to life
on the other side

let her sing and dance
with the angels
instead of
with
me

free her spirit fast god
from the tangled mind
and weakening body
that imprison her

then again, bide your time
a sedated slumber
is better than a
final resting place
where I can’t
see her face
or hold
her hand
as she
sleeps

how can her life
end as mine began
with dirty diapers
tentative steps
gurgles
drooling and trying to find
unknown words?

don’t take her now god
I will miss her
too much when
she goes

leave her
hand in mine
we can shuffle
a little further
on hell’s road
to heaven

we can play a duet
or two

I can read her stories
touch her hair
watch over her
as she did me
when I was
her baby
and she
was not
mine

let her stay
with me
a while longer
before you
take her home
where she longs to go

and when you take her god
don’t take everything

leave a piece
of her within reach
to accompany me
as I have
her

take her now god
but don’t take
her ever
I will
miss
her
so

Appreciated. 

The Caregiving Roller Coaster Twist No. 267

OLYMPUS DIGITAL CAMERAFor those of you who blog, there is a feature that lets you schedule posts. I love it because I know if I have something to say, but already posted for the day, I can push the story forward a few days. I’m hesitant to barrage you with more than one post a day. I’m breaking that rule today … and might not follow it again.

I did that last week with These Sneaks Are Made for Walking! In the morning I posted the story about Palliative vs. Hospice Care and went to visit my mom to find her using a walker to move around her community. I came back, wrote about it, and then scheduled to post. I didn’t think about at all as the weekend unfolded. So now the story is a little out-of-order. I’m sorry for that. I also realize I posted twice on Sunday … but I did sleep between posts so they felt like two different days. ; >

Unfortunately, on my visit today (Tuesday, 3/31), I find mom isn’t doing well. The hospice social worker told me on Monday they were not going to discharge mom after the fall and that she was not interested in getting out of bed.

The PDA I see most texts me this morning to check in after she arrives and reports the same this morning. Just last week she had mom walking all over the community and today, she is unable to even transfer herself. I know she is bummed to see my mom in such a state after she was doing so well. We all are.

My mom still has a very pronounced lump on her forehead and now has a black eye. The discoloration can be seen all the way down to her neck. My mom asks me to repeat almost everything today which is very unusual. After my visit I call back the social worker to ask her when the doctor is going to visit next. She tells me he’s going to see mom tomorrow.

After I’m done reporting what I saw, she tells me point blank “most people don’t recover from a fall like your moms.” I supposed we have all heard how devastating falls are to frail elderly patients, but it just didn’t seem that bad as we sat in the hospital. I was more worried about a concussion given that two of my daughters good friends have just suffered one. Mom didn’t even have a concussion, but the lingering effects are very noticeable and real.

We’ve been to this place before. If this is the beginning of the end, I only pray for it to be swift. However, I have watched my mom fight back from a lot worse. Told.

 

My mom had a stroke, what do I do?

stethoscopeHeartOver the past month, I have had several friends tell me a parent is having trouble medically and they are unsure of what to do. In the midst of a crisis, having the conversation about how to help often comes across as gloomy, as if you don’t expect them to get better. It’s why I suggest that you have the conversation early and often. If it’s part of general conversation, exchanges of ideas, hopes and wishes, it is not gloomy. When you discuss your options before there is a crisis, you have a lot more choice.

Many of us realize that after mom or dad had a medical issue and now needs more care. Your options are limited if you are doing your selection from those facilities that can take you; or interviewing those caregivers that are available.

While I was frustrated by my parent’s unwillingness to share or curb their life based on limitations that came from the aging process, I totally understand it now. I crave to give my mom activities that would fill her with meaning and purpose. Now that I am managing everything, I sure wish I could share some of the duties with her. It would make both of us happy.

After the critical incident, you do what you can, as best you can. Take a moment to consider how many people are aging without the help and support of a loved one. I am proud of how I’ve worked to help my parents. As difficult as my job has been, it’s infinitely easier because my parents were quite clear about their thoughts on life and living. We watched two grandmother’s fade with dementia, and we discussed it. My siblings are also supportive and we used this to bring us closer together.

My hope is that you don’t repeat the mistake that put you in this position. Your job is to:

  1. Get your stuff organized
  2. Define your wishes using The Conversation Project to get talking or Five Wishes to create a plan that is legally binding in 42 states.
  3. Work with an estate lawyer to get at least  a durable power of attorney and medical directives in place (if you don’t use Five Wishes)
  4. Discuss your wishes and plans with those people who would be the ones to step in and help you.

The U.S. Department of Health and Human Services reports that 7 out of 10 people turning 65 need long-term care services averaging 3 years. To me, that confirms that most American’s will have to accept that another person will be making choices about their healthcare, finances and living arrangements. Have you made sure those who will fill this role know what you want?

My siblings and I have made many decisions for my parent’s. The most difficult was having to opt not to start cancer treatments for my dad who was in a moderate stage of Alzheimer’s. Just the thought of this decision still brings tears to my eyes. However, I know we made the right choice for him because we had conversations about quality of life for years leading up to this event.

Four products to help you navigate these choices include:

Five Wishes lets your family and doctors know:

  • Who you want to make health care decisions for you when you can’t make them.
  • The kind of medical treatment you want or don’t want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care

The Roadmap to the Rest of Your Life by Bart Astor will help you hone in on the options and the choices that you need to consider.

MemoryBanc: Your Workbook for Organizing Life is a practical system to help couples share account numbers, usernames, and medical and household details so that they can stay on the same page; it also provides individuals a solution to easily share this information should they ever need a loved one to step in and help them.

 

Worried about Mom’s Health and Safety

Many adult children start to notice changes in mom or dad. Depending on your family dynamic, you may know a lot or very little about what they have planned for the rest of their lives.  Many of us want to be able to help our parents if they needed it, and most of our parents are resistant to even consider asking for help from their children.

My suggestion is to start by sharing with your parents your plans. Do you have an estate plan in place? Have you named them as a guardian or executor? I’m surprised by how many people who think estate plans should be secret. Secret estate plans won’t help you when you need it. I sent copies of my completed estate plans to my three siblings and sat down and discussed it at length with my brother who would be guardian to my children along with my children one Saturday afternoon this winter. I could see the comfort on my 12-year old daughter’s face as we talked through the plan.

My children have watched as I’ve been the primary adult caregiver for my parents which I have been blogging about for several years on DealingwithDementia.org.  Had my parents not told me their plans and shared their wishes for retirement with me, my job would be so much more difficult and stressful. I know that I’ve been fulfilling their wishes to the best of my abilities.

It’s particularly important to do more than the estate lawyer, financial planner and insurance advisor recommend. You need to talk about your choices, leave a roadmap to your documents, accounts, and assets and repeat these conversations as time and circumstances allow.

I recommend you get your own house in order and use it to share with mom and dad what you are doing and even ask for their advice. It’s a great way to start a conversation.

Four products to help you navigate these choices include:

Five Wishes  is legally binding in 42 states and lets your family and doctors know:

  • Who you want to make health care decisions for you when you can’t make them.
  • The kind of medical treatment you want or don’t want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.

The Conversation Project is dedicated to helping people start the discussion about their wishes for end-of-life care.

The Roadmap to the Rest of Your Life by Bart Astor will help you hone in on the options and the choices that you need to consider.

MemoryBanc: Your Workbook for Organizing Life is a practical system to help couples share account numbers, usernames, and medical and household details so that they can stay on the same page; it also provides individuals a solution to easily share this information should they ever need a loved one to step in and help them.

You are my daughter?

choccoveredberriesI’ve had the suspicion that my Mom doesn’t know my name anymore. She used to use it and hasn’t done so in over a month. When I arrive, the woman who runs a day program for resident’s with dementia is taking a walk with my Mom.

When my Mom sees me she smiles and I get the typical “Hey, I know you.” I respond, “Hello, Mom” and she quickly replies “You are my daughter?”

“Yes.”

I knew this day would come. She is quick to follow me back to her apartment when I tell her I brought her some chocolate covered strawberries.

She spends little time in her apartment now. She will usually tell me she doesn’t know where it is and asks me if I will walk her back to her apartment before I leave. She is always asking what she can do. She craves activity.

Thankfully, the community started a program that runs from 9:00 a.m. to 3:00 p.m. that has been keeping my Mom busy. She hasn’t been spending days in bed which is what she used to do before the program kicked off. She doesn’t remember that she’s in the program or what they did that day, but it has made a difference in my Mom. I’m not sure if she’s more accepting because of the disease-state, the medication, or she has enjoyed the benefits from accepting help from those around her.

I know the biggest factor for my Mom is my familiarity with her likes and her routines. While she doesn’t recognize me as her daughter anymore, knowing how to interact with her and avoid trigger points has made all the difference in the calm we enjoy together.

I knew this day would come, but knowing it would arrive doesn’t make it any easier to accept. Bummed. 

The Ultimate Mother’s Day Gift

redpresentI recently finished teaching a course for adults over 50 to help them gather their important papers and document their personal wishes. An important statistic I shared with them came from The National Clearinghouse for Long-Term Care Information, which reports that by the age of 65, 70 percent of Americans will need long-term care—and the average term is a little more than three years!

Several of my students were widows with grown children, and during the class, they approached me to ask about services that could help them manage if they needed support. They didn’t want to burden their children, and the isolation felt behind that simple question hurt. I know my Mom felt the same way, yet I believe most children would prefer to have this discussion with their parent rather than struggle through the issues my family faced (visit the first post on this blog if you are unfamiliar with our challenges in caring for two parents with dementia). I can imagine the hurt I would have felt had my Mom hired someone and not discussed her choice with me or one of my siblings.

While we have just celebrated Mother’s Day, I hope those of you in great health with vibrate families will consider celebrating your mom with the ultimate gift — your time. When you need this information is always a bad time to start the discussion. Every day is a good opportunity to let your mom or dad know that you are there and would like to help SHOULD they ever need it.

Good times to raise your offer include:

  • When they ask you to be their executor or share their estate planning documents with you.  Let them know you are honored to be asked and request that they schedule some time to sit with you to share the information you would need to fulfill this role.
  • When something has happened to a family friend. These are the best times to warmly ask how your parent might want you to help if your family was faced with a similar situation.
  • At family gatherings when you are all sitting around a table. You can ask open questions like “Have you noticed any changes or had to give up things you love since you have gotten older?” Once you find an opening to the discussion in a positive light, you should be able to build on that discussion.
  • If a parent has cognitive impairment, there may never be a good time. It could be that they don’t remember much of the information and are afraid to share it with you. In this case, you will have to work on finding mailings and checking files to collect the information. A cell phone with a camera can be an easy way to gather information without mom or dad feeling like you are sneaking around and taking their papers.
  • In general, you will need to be patient, take it slow and look for windows of opportunity to raise these issues.

When you are ready to sit down with Mom or Dad to gather this information, please use this list to identify the information you need. If you are interested in using the MemoryBanc Register which prompts you through the collection of all the needed information, any order placed in the month of May will receive a 20 percent discount when you add in the coupon code of “Mother”. Gifted. 

 

Your Mom is not doing well in the Assisted Living Community

sunriseThe death of my father impacted my Mom cognitively. For years they were a team that managed their dementia by being together. Now my Mom’s alone with no wing man.

Her decline is escalating and unfortunately, she’s getting more combative. I’ve noticed this on my visits as we interact with others in the community — at least she is usually kind to me. However, she now believes someone stole a card set she used to run bridge games and this is causing grief for everyone. She has always tended to perseverate on specific topics and this month, it’s the bridge card set. My mom turned over the set to a woman to run the games but doesn’t remember and/or doesn’t like it on any given day.

I was called by the head of the community and they asked to have a meeting with me. They took me through a litany of events and issues and are worried that they are going to be unable to care for my Mom. She is refusing to take the prescribed medication, which includes a change to give her Lorazepam daily. Before, it was used as needed to reset her anxiety, but her behavior now has moved the recommendation to a daily dose.  

I ask for suggestions, my Mom can’t be the first resident they have faced they have trouble helping. The head of Assisted Living has decades of experience as well as do the collective experience of the other staffers at the meeting. They share the varied things they have done to try and help my Mom that have failed — many that worked for others. They have even tried a variety of new things given my Mom’s interests and mobility. The psychologist and the head of the dementia care unit have spent time with my Mom over the past few weeks and felt that unless she started taking the mood medication (Lorazepam), the community would be unable to help my Mom. The biggest difference with my Mom is her mobility.

If we can’t reset my Mom’s anxiety, and her behavior, they will put her on a 30-day discharge plan.

So here we are and the first step is getting my Mom to take her medication. I ask if they can just give her the 1 pill. It’s very small, she could easily take it and then they could reintroduce the vitamins and other medication that they believe are “essential.”  My Mom has never liked taking pills and resents that the staff watch over her while she is presented with 7 pills in the morning. Most of them are vitamins. I requested that they minimize the number of pills my Mom was taking several months ago, but the doctor felt strongly we should not make a change. She recently just refused to take any pills.

As my Mom continues to decline, it’s still surprising how many things she can do. However, her disease is moving her into a very negative place and we are struggling with how to best help her manage within her community. Just when you think you have a handle on the situation, it shifts and challenges you in new ways. Confronted. 

Please share your experience – positive or negative with different medications or a similar behavior.

Birthday’s and Dementia

82PresentsMy mother recently celebrated her 82nd birthday.  My mom has had trouble remembering her age … however, I can sympathize. I told people I was 48 for almost a year before my husband corrected me and clarified that I was only 47 at the time.

I am starting to recognize that as we approach each holiday or birthday, I’m starting to wonder if this will be the “last time” we can celebrate this moment together. I am working to enjoy the moment and not let that doom and gloom notion drive me when planning. However, I do consider how to make the best of each visit and had fun with my mom’s 82nd birthday.

Since my mom is having trouble remembering her age — and in the hope of extending the birthday tidings beyond just the day of her birthday — my kids and I created 82 presents for my mom and numbered them.

On her birthday, we delivered a basket filled with 82 gifts. We had a few special presents she opened, and told her the rest of the boxes she could open at her leisure.

We visited Micheal’s, and purchased little wedding favor boxes and filled them with chocolates which is a gift she will never grow weary. I don’t expect my mom to remember our visit, or even where the presents came from, but for a little while, she can enjoy her birthday tidings. Celebrated. 

Let’s not have the doctor tell your father he has Alzheimer’s

stethoscopeHeartWhile my parents are in Assisted Living and receive medical care and support for their activities of daily living, I still want to continue their habit of an annual physical with their military doctors. It allows me to ensure that I am well versed on their medical state, understand and ask questions. Most of their appointments in Assisted Living happen when I’m not present and it’s difficult to piece together from the reports. Many times I can’t read the doctor’s hand writing.

As we sit in the medical office waiting for the doctor to arrive, my Mom is telling me that Dad is not doing very well. She is angry that he doesn’t engage in more activities and won’t join us on our shopping trips. Repeatedly, I have shared that Dad can’t help that his brain has changed, which changes him. I tell her he might feel uncomfortable leaving their home. When my Mom continues to complain to me, I will usually softly tell her that Dad has been diagnosed with Alzheimer’s. “Oh” she replies.

This is not the first time I have told her this, but she doesn’t remember. I try my best not to resort to this because each time I tell her, it feels like she is hearing the news for the first time. Each time, she is noticeably saddened by the news.

She asks if this means she should be a little kinder to him. She admits to chiding him for sitting and reading all day and showing no interest in any activities. She knows that he is going to see the doctor after her and says “Let’s not have the doctor tell your father he has Alzheimer’s.” Beloved. 

How are your parents doing?

ForKayMany people ask this of me and I am pleased to share that my parents are happy. I know that my parents are not going to get better, this is a possibly a very long slow road of decline, but for now, I have a positive response when asked.

On my last visit, my mom had actually created a mail pile for me that included a bill and a check. She even put a label on the pile for me (see photo). Typically, I arrive at their apartment and as we are chatting, I will slowly wander around, pick up and sort through piles of mail, envelopes, papers and magazines.

I bring a large purse and casually drop in bills, magazine renewals and requests for donations that I find. Typically, the most important papers are in my parent’s bedroom — but I wait for an invitation to enter. On a weekly basis there is usually a reason my mom wants me to help her with something in the bedroom.

I will continue to respect their independence and tread lightly. It seems the less I push, the more they offer. Discovered.