Tuesday, November 14, 2017

Dementia's Wife Steps Out of the Caregiver Role

It's been a while since I have posted. Slowly I am adjusting to this major life change that Jim and I are experiencing. At times I am incredibly sad. How can I not be? I miss him terribly. He continues to lose ground cognitively and physically. This is expected of course, but still just incredibly sad. I don't know which is worse; losing him a little bit at a time or dealing with a sudden death. Of course I don't get to choose, so I will make the best of it and appreciate what we still have together.

I see Jim every day, usually spending the morning or the afternoon with him. I enjoy this time with my sweetheart. I help him shave, brush his teeth and make any clothing adjustments as needed. He is always glad to see me. We still hug, kiss, and hold hands.

I've noticed that he is speaking less; he rarely initiates a verbal exchange. In response to others' conversation or query there may be no response, an unintelligible response, and every once in a while he says a phrase or two that makes perfect sense.

In spite of this, he is still able to quietly tell me how much he loves me, or to say "You are the love of my life". This is a phrase that was commonly said to each other over the years. Somehow he is still able to express this. How lucky I am to still be able to feel and hear his expression of love for me.

His gait is slower and more unsteady. He usually uses the railing on the wall for balance as we do our laps around the unit. His kindness to others who live here is such a gift! To be able to see the "real Jim" in action is so heartwarming. It is expressed by a gentle touch, a kind word or lending a hand to someone who needs his help.

Never, ever, did I expect such a smooth transition for Jim. I anticipated that he would be miserable, unhappy and always trying to "go home". The kind, gentle approach and an environment perfectly suited for one with dementia have all contributed to his happiness and contentment. The nursing home is able to do for Jim what I never could have provided for him at home. A warm, loving, caring and safe environment.

I am happiest when I am with Jim. It is so reassuring to see him, touch him and be reassured that he is doing OK. Evenings are the toughest for me. By the end of the day I am tired, low on energy and feel the emptiness or this big house.

I'm getting my life in order to prepare for downsizing sometime early next year. It will be a relief to move to something small and more manageable. I'm leaning toward a condo or townhouse. I'm still working out the financial piece to pay for Jim's care at the nursing home. It's complicated and expensive, but I've got some very smart and caring people to help me with this process.

I am seeing a psychologist (Dr. M) once a week. I'm so glad that I decided to do this. It gives me the freedom to say what ever is on my mind in a warm, caring and supportive environment. I talk, and talk, and talk some more! This therapy allows me to say freely what I am thinking without worrying about judgement or acceptance. While the stress of being the frontline caregiver is gone, I know that the inevitable loss of Jim is going to be very hard on me. I'm grateful for the support from Dr. M to see me through this difficult time in my life.

It's funny the things that will cause me to become overwhelmed with emotion. Last night I was talking on the phone with my friend Julie. We started to talk about Thanksgiving, and suddenly the tears just started falling. I'm working through an internal conflict about what I will do for the holidays. My heart is saying that I can't imagine the holidays without  Jim. But then I need to work through the obligation of what someone else thinks I should do. My heart will win, thankfully, but hopefully without too much angst over others' expectations.

I'm not sure about the direction of my blog, or even if I should continue to post. I'm so grateful for the opportunity to write and have this wonderful group of friends visit me and respond with warmth and kindness. All of you helped me through the most difficult time in my life. For that I will always be grateful.


Jean M. said...

I have been thinking of you often these past few weeks, wondering if everything is okay. You are very brave and I admire you greatly. Please continue blogging, letting us all know you are doing. I would miss not hearing from you, as I am sure many, many others would as well. Take care. Jean

Anonymous said...

My sister and I are avid readers of your blog. Our 86 year old mother has dementia, but it isn't near the extent of Jim's and my father is still able to care for her. She doesn't remember things 5 minutes after they happen, she is unable to tell us what they had for lunch even when they have just walked in the house from eating. But then she has a very good day where she is actually able to carry on a conversation over the phone.

Please continue to post on your blog. You have helped us so much and we look forward eagerly to your next entry. We would be very sorry to see you go.

Carole said...

Hi Jean. It is readers like you that make me feel so connected and so supported in this dementia journey.

My world is changing for sure. I remember saying to Dr. M. that when I retired, I never had an opportunity to fully enjoy those early carefree days. I knew at the time that something was wrong; what I didn't know at the time is that it was dementia and that things would get steadily worse, not better.

But here I am, and while I am sad about losing the real Jim, at the same time his move to the NH has allowed me to be his wife again, and not his primary caregiver. So there is a silver lining in all of this. Instead of struggling every day to meet all of his needs (which I couldn't), now I can visit him and enjoy those special moments when he is still able to connect with me.

Thanks for your comment Jean. Maybe I do have more posts to write, but just with a slightly different angle.

Carole said...

Thanks for your comment! I'm very touched that my blog has been a support to you and your sister. What you describe as some good days, and some not so good days is so typical of dementia.

It must be challenging for you, your sister and your father to be able to manage her care. Being 86 has its own challenges, and then add into that the dementia....tough for her and tough for all of the family members.

I'll continue to blog. Just reading your and Jean's response makes me want to continue. One of the things I love best about my blog is the dialogue that we can have with each other. We can share, support and learn from each other. And this dementia journey is not one we want to walk alone.

Anonymous said...

Thank you for your decision to continue! You help us to know what to expect next. Thanks again - I look forward to reading your next post!

Arkansas Patti said...

I am so glad that the chores of care giving have shifted and you can mainly be the loving wife once more. It should be easier and more enjoyable for you both.
I figured when we didn't hear from you that you were in an adjustment period but I do hope you will continue to share your journey with us. We have become attached to both you and Jim.

Carole said...

Hi Patti. Yes, it has been an adjustment period, more so for me than for Jim! I still find myself at times glancing over and expecting to see him, or thinking of something funny I want to share with him, only to quickly realize that he is not here.

Yes, it is wonderful to be in the role of wife again. Seeing him every day brings me such great joy. The fact that he is happier and more content than he was here at home is so reassuring and provides affirmation that the decision was the right one.

Thanks for your comment Patti. I'm realizing how attached I am to all of my blog friends too! :-)

Sue said...

Carole, I also hope you continue your blog. I have learned so much from you that is helping me with my father-in-law. I often think about you and how you are doing. I was feeling very concerned when we didn't hear from you for a while, but I knew you were making an adjustment to your new situation. None of us know what direction our lives will take and you are an example of someone who is handling a really tough, sad, and emotional situation with grace and smart decisions. Thank you for sharing and all my best to you and Jim in these days ahead.

Carole said...

Hi Sue. Thank you so much for your kind words. It means so much to me to hear that my blog in some way helped you with your father-in-law.

Even though I saw some of the early warning signs a few years ago, I never could have anticipated where Jim and I would be today on this dementia journey. You are absolutely right when you say that we never know what direction our life will take us. One of life's little surprises!

Anonymous said...

Hi Carole, I am one of those silent lurkers who has been deeply touched by yours and Jim's journey; I watch eagerly for an update. I hope you will keep sharing your story with us. You have done a beautiful job of caring for your dear love and how happy we are to know he is peaceful and well cared for in the facility. Take one day at a time. I know you will have the strength for each stage of this journey. Best to you and Jim, Becky

j said...

My heart aches for you and Jim. I always give thanks for making you so strong. I love hearing your stories. Keep up the strength. Wishing both of you Happy Thanksgiving!

Carole said...

Hi Becky. I am so touched by your thoughtful comment. It is truly heartwarming to think that others are touched by our story.

You mention "each stage of this journey". Sometimes I think about that, trying to imagine what it will be like with further progression of this disease. But I never imagined how quickly he would decline, nor could I imagine how this journey has played out thus far.

Perhaps it protects us from knowing too much too soon. We can focus on the here and now and hope for the strength for what the future holds.

Carole said...

Hi J. Thanks for stopping by and for letting me know that you enjoy reading my blog. I believe we are all vulnerable to this journey of dementia. Whether it impacts our family directly, or a neighbor or a friend, or even the person we see in the grocery store. This epidemic will effect all of us at some point in our lives. The more we understand about this cruel disease, the better equipped we are to be ready to face the challenges that come our way.

Happy Thanksgiving to you too J! I'm looking forward to a low stress day, one I can truly enjoy and celebrate with my sweetheart all that we have to be thankful for.

Valerie said...

'I will make the best of it and appreciate what we still have together'

It is the only way, Carole. I had similar feelings when my Joe was so poorly. We share our love with those who need it most. This time of year is hardest because it is the time when we should be together with loved ones. I feel my loss more as Christmas approaches. I hope you do continue to blog, you may find it helps to heal.

Carole said...

Hi Valerie. I have found an inner strength that I did not know that I had. I do believe that a lot of ii comes from my love for my husband. I know that you too know the deep sense of loss that comes with losing your spouse.

Holidays are always filled with emotion, aren't they. And I think it is even harder when you find yourself alone, as opposed to sharing it with your beloved spouse. As the holiday season approaches, I know that you too will be feeling the loss of your Joe.

I appreciate the encouragement to continue to write. I believe you are right that it may continue to help the healing process as I experience the loss of my Jim. Thanks for your comment Valerie.

DJan said...

I do hope you continue to write in your blog and let me know what you decide to do with the rest of your days. It's been a real eye opener for me to learn how quickly dementia can progress, and your writing is always heartfelt and caring. Please know that you are important to many people, including me. Blessings to you and Jim, no matter what you decide to do. Sending you virtual hugs. :-)

Anonymous said...

Carole, I've been following your blog posts for sometime now and I'm so happy to see you posting again. It's so good to hear that Jim is doing well in his new surroundings.
I hope that you will continue to write. I don't think you realize how important your journey is to others. Because I watched my father-in-law succumb to this illness, I knew how Jim's journey would progress,but the insight you have provided through YOUR journey is what i've needed to read. I may eventually go through the same experience with my husband and reading how you've handled it all and the emotions you've experienced has meant so much. Your journey certainly hasn't ended and I'm hopeful for you and your future. Now that you know Jim is contented and safe, I hope you will find some time to explore your own interests and find some contentment and happiness in your part of the journey. Hugs to you, Glenda

Mage said...

Please don't stop the blog. It offers a rich handholding for those of us who have fragile, dying, or ill friends. You give us a guide line to follow. You offer hope. Thank you.

Tehachap said...

I'll ring in with my own plea to please continue writing. I look forward to your posts and worry when too much time lapses between entries. I know you have Guardian Angels watching out for you. Blessings to you and Jim. Carol

Carole said...

Hi DJan. I'm pretty certain I will continue to blog. The heartfelt response is encouraging me to do so.

The rest of my days.....that is a good topic for a future blog post! The short answer is plan, plan some more and then plan some more. I spend a good part of the day with Jim, and then the rest is on preparing emotionally, legally and financially for my future.

Thank you for your caring and for your thoughtful words. I'm sending the love and hugs right back your way!

Carole said...

Hi Glenda. What a heartwarming comment! Thank you so much. I am humbled to think that my writing is helpful and supportive to others.

Yes, I am definitely finding time for myself. Just this afternoon I shared lunch with my dear friend Julie. This is something that would have been impossible 6 weeks ago. It felt so good to be able to relax and enjoy time with her. Relax.....it seemed unobtainable just a few weeks ago. But here I am, resting assured that Jim is safe and he is content. It allows me to now enjoy the simple things in life again.

Because you watched your father-in-law succumb to this illness, you know only too well the toll it takes on everyone involved. I hope your husband escapes this disease.

Thanks for your encouragement and kind words. Keep in touch Glenda; your comment in particular has encouraged me to continue posting. And for that I am grateful.

Carole said...

Hi Mage. Yes, I will definitely continue to blog. I'm overwhelmed with all of the comments and encouragement I have received. Thanks for your kind words. I wish you well on your journey.

Carole said...

Hi Carol. You are so sweet! Thanks for your kind words. Yes, I'm convinced to continue blogging. Actually, I think that all of my kind readers are my Guardian Angels! I am blessed to have such a wonderful community of caring people in my life.

Jabberwalky08 said...

Oh Carole,
You are still a caregiver, Jim still has dementia - it's just a different format now. It's all part of that world. Your reports are so touching, thoughtful and valuable - please keep writing when you feel moved to do so. A time will come when you will be ready to leave this behind, but maybe not quite yet. Thanks for your great blog!

Carole said...

Thanks for your perspective Jabberwalky! I can always count on you to help me look at things a little differently. You're right; while I may not be on the frontline of caregiving, I'm still providing for many of his needs, especially the emotional and psychological.

I've read where being a caregiver can be a time of personal growth. I think this is true for me; I've learned so much from Jim as he has struggled with this journey. And it has helped me to prioritize what is really important in life. For that I am grateful.

christina neumann said...

What you have written has been heartfelt,honest, heartbreaking and a true look into a world, I for one, have no clue about. I've learned a lot about dementia/Alzheimers so for that I thank you. Life can turn in an instance and you have shared your and Jim's journey. I appreciate that and would love for you to write now and then.

Carole said...

Hi Christina. Thanks for your comment. When I write my post, the words flow fairly easily. I think that is because I am truly writing from my heart. That my words might help, support or educate others is a gift I will never take for granted.

Since Jim has moved into the nursing home his decline of course, continues. I know that this loss will be felt very deeply by me. Realizing how therapeutic it is for me to write, and that it is a help and support to others, I likely will continue with my posts.

Thanks so much for your kind words Christina.

joared said...

I’m so pleased to hear how well everything is going, relatively speaking. Yes, follow your heart. Glad you have Dr. M. Perhaps you will want to cease this blog’s topic, or begin a new one some time in the future, or not. Whatever you choose is not irreversible. Certainly you have my continuing support and good wishes.

Carole said...

Hi Jo Ann. Thanks for your comment. Yes, I will follow my heart. I'm feeling stronger about my decision to spend the holiday with Jim.

I was rereading some of my older posts. The wave of emotions that I experienced is striking. I don't know how I managed to make it through such difficult times. But I believe that the wonderful support of you and the other caring readers of this blog really helped me through this difficult period of my life.

Anonymous said...

It's a good idea to see a psychotherapist on a regular basis. Good thoughts for you, Carole. Carry on!

Carole said...

Hi Gigi! Thanks for your well wishes. I'm so fortunate to have found Dr. M. It's wonderful to be able to have someone help me process some of the more difficult emotions/feelings/situations that I'm facing right now.

gideon sockpuppet said...

Carole, what you are experiencing with the loss of your life partner is just incredibly sad. My heart goes out to you. I lost my husband at a young age, but his was a sudden death. When you lose someone that you love, whether slowly or suddenly, it takes a long time to work through all the stages of grief.


Carole said...

Hi Jude. Thanks for your comment. This journey has surprised me along the way. Grief comes in waves, and many times it is just not expected. I'm sorry about the loss of your husband.

Someone once suggested that what I was going through was "worse" than what she had experienced. I don't think you can look at it that way. Each experience is going to be different, including how we manage and cope with our feelings.

The kindness from you and the others on this blog is a gift that will always be in my heart. It helps me as I travel this journey, knowing that I am not alone.