Saturday, December 23, 2017

Finding Family in the Community of Dementia

Nothing could have surprised me more. Jim and I are making some wonderful friendships with the folks at the nursing home. Who knew? I know the names of most of the folks who live at the NH, as well as the staff who work there. We are enjoying that feeling that comes when you are getting to know someone, and finding that spending time together is a joy.

The staff are experts at interacting and comforting folks with dementia. When Marlene starts to cry because she "can't find the bus stop so I can go home", staff will gently reassure her that the bus doesn't come for another hour, and they will come to get her to make sure she doesn't miss the bus. Marlene smiles and says "thank you", and then joins the group at the table for cocoa and cookies.

When Jean cries out "Where is my son?", staff will reassure her by saying that he is at work, but will be by in an hour to visit her. Jean is satisfied with this response and asks to participate in a game of Bingo. 

The staff are showing kindness by reassuring each resident. The fact that the short term memory is so impaired allows staff to answer with what I call a "love response". I am in awe of their creative and kind ways to make certain that no one feels alone, frightened or deserted. 

When I visit Jim, I am fortunate to be a part of this fellowship. It is deeply comforting and heartening to see the love and caring that happens here.

Jim spends very little time in his room. I hear from staff and other family members that when I am not present, Jim enjoys the activities that are offered. He continues to engage in his counseling role, trying to reassure those who seem in distress. He sometimes talks to the staff as though they are his staff. This is reminiscent of when he was working in an administrative role and supervising a number of people. For example, the other day he approached a staff person and said "don't forget to talk to him about (something unintelligible). Staff person was great; she responded by saying, "don't worry; I'll make sure to do that."

I've had some folks say something along the lines of "this must be a very difficult holiday season for you." But you know, it actually is the best holiday season I have had in a few years! In holidays past, there was the stress of preparing food for ~ 20 - 25 people, as everyone gathered at our house for all the major holidays. The last few years were extremely stressful as Jim continued to decline. It was quite a balancing act trying to protect him and keep him stable, and at the same time entertain for so many people.

So instead, I've been a part of numerous holiday festivities at the NH. Baking cookies, Christmas carolers, Christmas parties, holiday sing-a-long, and visits from Santa. All with NO stress for me! And on Christmas day I will share a ham dinner with my sweetheart and the other guys at the table. There will be holiday cheer, another visit from Santa, and pleasant conversation. 

However you celebrate this holiday season, I'm sending lots of good cheer your way. I'm so grateful for each one of you. Your support and kind words have made my walk with dementia a little easer, and for that I am thankful.


32 comments:

Roberta Warshaw said...

I wish you all the best on this holiday season. I am glad you are both finding some peace finally. You should know that even though I am not dealing with anything like what you are dealing with, I find your words to be an endless source of comfort as I grieve in a different way.

Anonymous said...

What a wonderful report. I am so glad you have been able to become part of Jim's new living situation. The staff sounds like wonderful friends, and how nice to make new friends. Best wishes to you and Jim in this holiday season.

Marty said...

How wonderful that Jim has a wonderful new home and so many burdens have been lifted off of you.
Merry Christmas.

Carole said...

Hi Roberta. Thanks for sharing this with me. My heart goes out to you. While circumstances may be different, we share a bond of surviving difficult situations. Wishing you peace this holiday season.

Carole said...

Thanks for your comment dkzody. Dementia has provided a roller coaster of emotions. I'm so grateful that Jim has settled in and is happy and content. I couldn't have asked for more! Best wishes to you and your family for a Merry Christmas.

Carole said...

Merry Christmas to you Marty! Three months ago I couldn't see our way out of a very difficult situation. But now I find myself so very grateful for how everything worked out. I know there are still tough times ahead, as Jim continues to decline. But there is great peace in knowing that he is safe and happy, and that we now have a caring and safe environment in which to share our love and devotion to each other.

Valerie said...

Happy Christmas to you and Jim. Reading this post is so reassuring even though I knew it was the best way forward for both of you. Have a wonderful day and do try not to over-eat

Carole said...

Merry Christmas Valerie! I never dreamed that this is where Jim and I would be in our lives. But here we are, and I'm so grateful to have found so much love, caring and support along this journey. I am truly a fortunate woman. My very best to you and yours during this holiday season.

Anonymous said...

Merry Christmas to you and Jim. It really is a blessed Christmas for you both, having found such a wonderful and caring place for Jim. No matter what the future holds, I know you'll have the support and love needed to carry you through any difficult times. Carol (aka Tehachap)

Arkansas Patti said...

I am just delighted with this post. I am so happy for the both of you that a wonderful solution has occurred. Jim can feel useful and more or less in charge and you are not looking over your shoulder waiting for another shoe to drop or situation to handle. The stress has been removed for you both as you get to enjoy eachother with love and caring. What a blessing this home has become. Thank you for this present to those of us who have followed, worried and cared. May 2018 be equally blessed.

Carole said...

Merry Christmas to you and Robert! I am forever grateful for the friendships and bonds that have developed from my blog. All of you have cared, listened and responded so kindly; it really has helped see me through some difficult times. Hope you have a wonderful holiday Carol.

Carole said...

Merry Christmas Patti! You are so right....I am no longer waiting for the next crisis to happen. Instead I am at peace, and so is Jim. I'm grateful for the friendship we developed over the blogosphere. The thoughtful caring and kindness will always remind me of the joy in friendships that come our way. DJan wrote a post yesterday that included a poem on friends. It touched my heart. I am rich in friendships, and for that I am grateful. Hope your holiday is peaceful and full of love.

Jabberwalky08 said...

Oh Carole, this is such a comfort to hear, that residential care CAN work out well. People tend to repeat the negative stories instead of the good ones. You go a long ways toward turning that around!
Wishing you a safe and warm Christmas season!

Carole said...

You are so right! The stereotypes of residential care homes are abundantly negative. For some care homes that is true, but certainly not always.

I can take no credit for choosing the right care home. (Love the term care home instead of nursing home!) Jim almost landed in one of the neglectful homes, but fortunately a caring person made some phone calls on our behalf, and the rest is history, as they say.

I remember your sage advice a while back about scouting out residential homes in advance of actually needing one. I never did this; partly because the logistics of doing so was difficult and also because I never expected that Jim would need placement so soon. I don't like to rely on good fortune, being the planner that I am. A lesson for others who may be in similar circumstances.

Hope you have a wonderful holiday season. Thanks so much for all your support.

DJan said...

Okay, Carole, I am now sitting at the coffee shop with tears streaming out of my brand new eyes, filled with love and gratitude for the wonderful gifts we have received this holiday season. Thank you for continuing to post and let those of us who love you to share in your joy. :-)

Carole said...

Oh Djan, I have to tell you that I had a similar reaction when I read your post from yesterday that included the poem about Friends. Loved the poem; so poignant and true!

Glad that your brand new eyes are working so well. Merry Christmas to you and yours :-)

Mage said...

Yes, we found all this to be so positive when we visited Duck every day. Thank you for this and all your other posts. Merry Stress-free Christmas.

Carole said...

Thanks for your comment Mage. So many of our lives are touched by this cruel disease. I'm grateful that we can draw on our inner strength and support from each other, as we travel this journey with dementia. Hoping you have a peaceful holiday season.

Anonymous said...

Merry Christmas, Carole. Aloha from Hawaii.

Carole said...

Sending you and David wishes for a Merry Christmas. Aloha!

troutbirder said...

Merry Christmas Carole to you and Jim. Although the word nursing home are banned in our house it is comforting to know such places as you describe exist. And yes I too am learning among other things how to "redirect" sometime well sometimes rather clumsily.... Still today our D.I.L. brought Christ dinner to share with us. Twenty years since she lost her husband and we our son. It was wonderful. I signed her Christmas present from Barb, Ted and Ray....:)

Carole said...

Hi Ray. So glad you were able to share dinner with family for Christmas. I too, had a very negative stereotype of nursing homes. In retrospect, I should have visited several prior to ever needing placement for Jim. I NEVER, ever thought that I would have to place Jim in a NH. But as you see, sometimes circumstances are such that for safety reasons, it is a necessity.

Because it is a dementia care home (as opposed to just a care home for the frail elderly), the staff are chosen and trained for dementia care. It has been my observation that they find satisfaction in working with this population. Otherwise they would have chosen other employment.

I was not aware that you had lost your so 20 years ago. I'm so sorry to hear that. The loss never really goes away, does it.

Sending you hugs and healing thoughts this holiday season.

Anonymous said...

I wonder if you saw the Dr Oz show yesterday where he interviewed a Dr who has reversed Alhzheimers in several people. Two ladies gave their experiences who were able to reverse lack of face recognition and are now normal. The show yesterday on Christmas was like a gift to our planet. I hope you can watch it and encourage others. Thanks for your kind ways of sharing. - plynjyn

Carole said...

There are some types of dementia that are reversible. For example we know that deficiency of B12, depression, medication side effects, lack of thyroid hormone can all cause symptoms of dementia. It shows the importance of a good medical evaluation when symptoms of dementia are present.

Dementia is such a cruel disease, and we all hold out hope for a cure some day.

Thanks for your comment. I hope you have a wonderful holiday.

joared said...

I’m so pleased to read the staff where Jim resides are so positive and supporting to residents and their families as they are with Jim and you. Hope this holiday season continues to be so pleasant for you both — the Merry Christmas and Happy New Year!

Carole said...

Hi Jo Ann. I am so grateful for the gifts I've received. The gift of love, friendship, caring, and a safe harbor for my sweetheart. Thanks for your support throughout this journey. I remember that you were my very first and only commenter on my very first blog entry! Reaching out to me meant a lot. It was the start of a long journey, but with a reassurance that I was not alone.

Anonymous said...

HAPPY NEW YEAR, CAROLE! ALOHA FROM HAWAII.

Carole said...

Happy New Year Gigi to you and David! Aloha!

Dr Sock said...

The staff at Jim’s care home sound wonderful! I am so glad that there is a sense of community and caring there. I too held negative views of assisted living and memory care facilities until I visited my grandma in her facility. It was physically very nice (paintings on the wall, oak panelling, bright cheery dining area). But most important was the friendly caring staff. There can be a wide range of quality of care and it sounds like Jim is in a great place. Best to you in the new year.

Jude

Carole said...

Hi Jude! Thanks for your comment. I'm embarrassed to think back to judgmental thoughts I had about care homes. I was focused on the negative stereotypes that are out there in abundance.

I'm so fortunate that this care home is wonderful. But I was remiss in not researching all the options prior to needing this level of support. In retrospect, I should have visited several prior to Jim's placement.

Happy New Year to you and your family Jude!

Tehachap said...

My daughter-in-law's mother has Alzheimer's and she attended a talk recently that impressed her. She's given me a link to the website for the speaker. I know that Jim is in a care facility, but there are others who follow your blog who might benefit from this information. Hoping all is going well for you and Jim...

This is the speaker's web site: http://teepasnow.com/

Carole said...

Hi Carol. Thanks for the link! I first heard about Teepa Snow from Peregrine Memory Center (back when I was exploring placement options for Jim). Teepa's approach is so thoughtful and loving; apparently many dementia care units use her approach in training their staff.

Sometimes I get frustrated with Jim's brother that he has such difficulty communicating with his brother. But then I need to remind myself that it doesn't come easily for some folks.

Thanks for your comment Carol. Always so good to hear from you :-)