Another New Year.

We are approaching New Year's Eve once again and my thoughts turn to 2014 and what is to come, as well as what I want for myself and my family in the coming year.  I don't believe in resolutions, but I do believe in hopes and goals.  I have a few that I'm going to be working towards this year: finishing and publishing my second book; continuing to create and improve my blog and website; continuing to write for whatever other sites want me; maintaining my support groups and my volunteer work; cementing ties with my friends and found-family; and just being happy. 

My thoughts also turn towards my dad and his gradual, incremental slide away from me and the world. I wonder if this will be the year that I lose him.  Part of me hopes so, as shocking as that might sound to some; I have faith that other caregivers understand what I'm talking about.  I know how horrified and angry he would be at what is happening to him.  I know he would be humiliated at the type and amount of care he needs.  I also know that it is so sad to see his once-active, strong body deteriorate slowly. I don't think he would want to carry on this way.   It is never given to us to know when our final moments, or those of our loved ones, are here, however.  I can only hope his final ones aren't difficult since he's been through so much already.

This coming May will be the tenth anniversary of my moving in with dad and becoming his caregiver.  I can't believe its been ten years!  Things both wonderful and terrible have happened in those ten years, but I don't suppose I would change much if I had to go back and do it again.  I think I would still have chosen to take dad on.  I'm pretty sure making that choice in the first place led to growth and expansion I might not otherwise have experienced. Who would have thought it?

All I can do now is what all caregivers do: take it day by day, keep on keepin' on, live in the moment, and, my personal favorite, hope for the best and prepare for the worst.  I hope that this year is a positive one.  In the new year, I wish for peace, comfort, and relief from pain for dad; happiness and growth for me, my husband and friends; and a moment of ease and love for all my fellow caregivers.

A Smile for Christmas Present.

It's Christmas Eve eve today and I have to say I haven't been feeling all that Christmassy this year.  I feel like I had a whole bunch of other day to day stuff to do, and before I knew it, it was the 23rd! I had to scramble a little bit over the last week just to get the cookies made and the out of town gifts shipped off.  Luckily, I finished my present shopping a while ago!

I stopped by to see Dad during lunch last week, something I usually try not to do since I know they're busy getting all of their people fed.  Dad did not look to be in a good mood that day; he wouldn't look at me, even when I rubbed his back.  He ate his lunch, but it definitely felt like he was elsewhere.  After the meal, they got him up to walk him around the house a bit.  They've been telling me how shaky he is on his feet, and how reluctant he can be to walk, and I really got to see it.  He walked bent over, with his shoulders drooping, feet tentatively finding their way on each step.  So different from the strong, active father I used to know.

I came by for a visit with dad today, as well, to bring Christmas cookies and a gift for him.  I got him a really, really soft blanket that I embroidered his name on that the caregivers can put over him in his chair.  The cookies are ones that my mother used to make which have become a holiday tradition.  I got there just as they were finishing up lunch; the caregiver was feeding dad pieces of melon, which he seemed to be enjoying.  This time when I rubbed his shoulders, he looked over towards me and met my eyes.  I smiled and said hello and he smiled faintly back.  It was nice to feel a little bit of his attention.  I hope there is a part of him that can still taste and enjoy the cookies.

I have to admit that I think I've been feeling a little bit of family holiday sadness, as well.  Dad, of course, will be spending the day in his lounger, and I have no blood family available to spend the holidays with.  It's down to my husband and me, which is fine, but I still feel a little bit sad when I see all the stupid holiday commercials about family togetherness. 

Christmas, of course, will never be what it was when we were children; as adults, we must make our own traditions and special times.  I am lucky enough to have glad memories of childhood holidays - complete with fifteen types of cookie, piles of presents, much-loved ornaments, and my parents always there.  My family will never be what it was, and I am a little sad every year that this is part of what Christmas has become.  I am lucky and grateful for what I do have, however, including a little smile from my dad during lunch.

And Respite For All!

I wrote this post a while ago, but I think it got lost in my folder so I never posted it.  It seems particularly appropriate to post it now, during the busiest, most stressful time of the year.  I wish you all a beautiful year's end and an abundant New Year!

All right caregivers.  Yes, I’m talking to you – those of you who have doing this for a while, and those of you who are new to the job.  What I’m about to say has been said before, many times, but it bears repeating.  We all know this is a rewarding, tough, challenging, maddening, time-and-energy-consuming, wonderful, crazy-making, exhausting, special task you’ve taken on.  We all know that nobody but you can provide the specialized, loving, unique care that your loved one requires; that only you know exactly what they need and how they need it; that they will respond only to you and that you are irreplaceable.  We know this.  But guess what?  You are replaceable – at least for a short while – and finding this out may be exactly what saves you and your loved one later on down the road.

Respite care is simply that, a person, organization, or facility that assumes care of the care-taker for a brief period of time so that the caregiver can have a break.  Respite care can be as informal as a family member or friend stepping in for a few hours, or as formal as a facility taking physical charge of the care-taker for a few hours to several days.  There are hourly adult day care/health programs in most major cities and there are usually area facilities that provide short term care.  Why is this so important?  Because caregivers can’t be everywhere all the time doing everything.  It’s just not possible.  When I was living with Dad in the earlier stages of his dementia, he went once a week to an adult day program where he attended a support group for men, was given lunch, and did other projects and activities.  It was good for him and vital for me to have those few hours to myself.  In addition, an old family friend took him for a few hours each week; they went to lunch and did other activities, walked her dogs, or worked on her garden, and he loved the interaction.

Studies (and my own personal conversations) show that family caregivers are reluctant to use respite services, often for very good reasons.  Ranging from lack of money for services to guilt at taking time for oneself to fear that one’s care-taker will be upset or agitated to fear of bodily harm and abuse – all of these are legitimate issues.  However, the reasons to USE respite care are even better.  The most important is that caregivers who get a few hours a week away from their duties are healthier, happier, and better able to do their job – it’s a proven fact!  In addition, respite activities can provide outside stimulation and interaction for a care-taker.  One of the most important reasons to use respite care is the fact that there will most likely be problems of some sort during your tenure as a caregiver that you will have to address – having an established relationship with a place or person that your care-taker trusts and likes so that they can be cared for in an emergency can be priceless.  I urge you to locate the programs and/or facilities in your area that provide this type of care – you and your care-taker will be better off!

Check with these organizations and sites for ideas and resources for finding care in your area.

The Family Caregiver Alliance runs a resource center and publishes fact sheets and a newsletter with tips for family caregivers. The organization can be reached by calling 1-415-434-3388 or visiting its website at    http://www.caregiver.org

Information concerning adult day services can be obtained from the National Adult Day Services Association at (703) 610-9005 or by visiting their website at:

• http://www.nadsa.org

To find out more about programs where you live, you can contact your local aging information and assistance provider or area agency on aging (AAA). The Eldercare Locator, a public service of the Administration on Aging (at 1-800-677-1116 or http://www.eldercare.gov ) can help connect you to these agencies.

Brave New Booklet!

Here is a link to a new booklet co-authored by the National Institutes of Health and the LBDA.  It is a comprehensive, easy to understand, and really helpful guide for patients, families, and professionals who are encountering LBD.

One of the main problems I hear from caregivers is that their doctors and other healthcare providers haven't heard of LBD or don't have much information about it.  I hope this booklet will change that somewhat so people can get the support and care they need. 

I believe you can download it and/or order it in booklet form. I will also post the link permanently on the sidebar of my blog.  I was picked to be on the team of Caregiver Reviewers who looked it over before publication and it was an honor to be given the chance to help future caregivers!  Let's hear it for spreading information!

http://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia

Making A Smooth Transition To An Alzheimer’s Assisted Living - Autumn Grove's Guest Post.

The day has come to move your loved one into an Alzheimer’s assisted living. Your family has weighed all options over the past couple of weeks and you all have agreed that this is the best option for your loved one. Now the actual day of move-in is here and everyone is nervous about how your loved one will react to his or her new home. Here are some tips to help make the transition go as smooth as possible for both your family and your loved one: 

 

1.     Constant communication is key. In the weeks leading up to your loved one’s big move; bring it up in light conversation. Make sure they understand, as much as they can, what their new living situation will be.

2.     Having all family members involved in the process will be most comforting to your loved one. If your whole family speaks in a positive manner about the Alzheimer’s assisted living to your loved one, it can help them feel comfortable about the move.

3.     Try to keep your loved one’s opinions and preferences in mind as much as possible when deciding on an Alzheimer’s assisted living. Remember, this is going to be their new home away from home. The more comfortable they feel about their new place, the easier the transition will be.

4.     Taking tours of multiple Alzheimer’s assisted livings will help your loved one see first hand the choices they have in rooms, activities, food, staff and residents. Allowing your loved one to get a feel of the assisted living before moving them in will help them feel more at ease on move-in day.

5.     Once your family and loved one have chosen a home, take the time to meet staff and residents before making the move. This way, everyone will get to know the people they will be seeing and interacting with every day, and it will help make the transition smoother.

6.     After your loved one is moved into the Alzheimer’s assisted living, it is important for you and your family to visit often. Spend lots of quality time with your loved one in their new setting. They may be feeling afraid that you are going to forget about them.

7.     Encourage your loved one’s friends to visit them as well. Having familiar faces will help make the transition less stressful.

 This can be a stressful time for your loved one and your family. Take time to talk to each other and remind your loved one that moving them to an assisted living will give them the best care they need. If you can, try and keep a routine of visiting your loved one to give them something to look forward to each day.

This post was written by Abigail who is a member of the staff at Autumn Grove Cottage, an assisted living facility specializing in cases of Dementia including Alzheimer’s disease. Autumn Grove Cottage is located in  Houston and San Antonio, Texas. Check out their website at www.autumngrove.com and see what they have to offer if you live in their area.