It was a startling revelation. Who knew?
Jim has been away from home for about 2 months now. My life is so much different. My days have a flow to them that seems comfortable. I see Jim every day; sometimes for the morning and sometimes for the afternoon. I have managed to find some joy in being outside and exercising again. I live close enough to some great outdoor spaces that are perfect for a long walk. I bundle up, head outside and enjoy all that mother nature has given to us. I've always had a passion for physical activity, but have not been able to enjoy it for the last year or so, up until now.
Every day I look forward to seeing my sweetheart. He is always glad to see me, telling me he is glad that I am "home from work". I so enjoy the time we spend together. It gives me great joy to help him with shaving, brushing his teeth, making his bed and selecting just the right clothes. I sometimes help him shower if staff have not already done so.
I've mentioned before that Jim is one of the very few who is still quite mobile. Most are in wheelchairs, some use walkers, and only a few are able to walk unaided. Jim's gait has slowed considerably, but he remains steady on his feet and enjoys "doing laps" around the unit.
There is a paucity of speech. His spontaneous speech usually occurs when he first sees me. We hug and kiss, and he tells me how much he loves me. He still has the words to tell me that I am the love of his life. We've always shared a very affectionate relationship and we thrived on physical and verbal expressions of our love for each other. How lucky I am that we are still able to share this closeness!
Otherwise, there is minimal speech. The other day I had someone take a picture of the two of us in front of the Christmas tree everyone had decorated. I was trying to get him to smile, so I said "Tell me you love me." He responded by saying "I love me."
Yesterday the daughter of one of the residents passed us in the hall and said "Hi Jim." He responded with a smile and said "Hi Jim."
His appetite is good and he really enjoys the food. There are lots of social hours and activities, all geared for folks with dementia.
Last week I needed to spend the day and the overnight with my mom following a medical procedure. It was the first time that I was not able to see Jim for at least a portion of the day. That night, as I tried to sleep, I quietly cried. I missed him terribly! I knew that he was perfectly fine. Staff love him and the other residents are fond of him as well. I knew that Mike had spent the afternoon with him, so that he would not be without company for the day. But yet in spite of that, I felt so alone and very lonely. I realized that I needed Jim, likely more than he needed me!
I'm grieving the loss of my Jim. As regular readers of my blog know, the loss has been fairly steady, especially over the last couple of years. The Jim I knew, is no longer. But! I still have a part of him, and it seems to be the very best of him. Our love for each other is something that we still can share and hold on to. What will I do when this is gone?
I'm receiving counseling on a regular basis and it is helping me immensely. For that hour, I am able to say whatever is on my mind and my heart, knowing that Dr. M. is there to help me process what I am feeling and experiencing. I cry a lot in these sessions, but I imagine that is to be expected. As the emotions lay raw I know that I'm in a safe place to work through this grief that is a part of my life.
In spite of this, there are still times of great joy in my life. In addition to the time I spend with Jim every day, I have reconnected with a few close friends. Going for a walk, going out to lunch, or just some girlfriend gab time together are all luxuries that were not possible 2 months ago.
Holidays can be a rough time for those who are grieving. I was able to spend Thanksgiving with Jim, sharing a holiday meal with him and the other residents. I look forward to doing the same on Christmas day. I did not decorate our house this year. I just couldn't find it in me to do so. Instead, I am thoroughly enjoying the Christmas tree and decorations at the nursing home. I brought up a small lit tree for Jim's room. The Rockettes Christmas video, the Christmas cookies and carols, and the festive atmosphere are all I need to enjoy this holiday season with my sweetheart.
Thanks for stopping by. I so appreciate each of you! The support I receive from the readers of this blog really means a lot to me.
**** I've added a second page to my blog, one that highlights the progression of Jim's dementia. You can access it by clicking the button at the top of the blog "Progression of Dementia".
28 comments:
You are adjusting to a new normal, one that isn't of your choosing. My sister and I think of your blog often and eagerly await your next entry. Thank you for continuing to post. Merry Christmas, Happy New Year, and thank you!
"....one that isn't your choosing." You are so right! One of life's little surprises, as they say. I'm sending best wishes to you and your sister, knowing that you too, are no stranger to the impact of dementia on our lives. Wishing you a peaceful holiday season.
Oh Carole... I’m so sorry for all the pain you are having to go through. Jim is lucky to have you caring for him even as this condition takes him slowly away. Sending you lots of hugs from across the country.
Hi Kay. So good to hear from you. I know that you too have experienced dementia with a family member. Thanks for your kind words. I feel like I am the lucky one to still be able to hear and feel how much he loves me. But yes, it is mutual, and I know that he feels loved by me too. I hang on to the this and try to appreciate each day that I have with him.
Always good to hear from you. We do worry you know. I understand you have to be missing him so but the times you do spend together seem so much more peaceful and loving than when he was home. He seems to have adjusted very well. I am also pleased you are getting in some recreation time and that your stress levels are down quite a bit. Counseling is a great idea.
I was worried about your health but it seems you are in a good place now with some balance to your life. Hope you have a wonderful holidays with your sweetie.
Thanks Patti for your kind words. Earlier today I was thinking back to how difficult this past year has been. You're right, the stress seemed unbearable at times and I worried that I was somehow causing long term damage to myself.
But you are right; I'm in a good place now. I never dreamed that Jim would be so content. But he is, and this truly brings me peace of mind. I appreciate your support and good wishes Patti.
I have heard reports before about how well the 'patients' settle in and that is good news. He is in safe hands and well cared for so it's now time to concentrate on you. Jim probably feels some relief as well, although he won't know it. Remember, time is a great healer and you will gradually get used to your new life. It will take time but we'll help you through it. Take care of yourself, that's more important now than ever before.
Hi Valerie. I never dreamed that Jim would adjust so well to his new "home". I was prepared for the worst, with a backup plan of bringing him straight home should the situation warrant. The loving and caring environment is more than I ever hoped for Jim in finding a safe haven for him.
You know only too well the grief of loving your beloved. Thanks for the kind words and the encouragement. It means the world to me that I have the support of you and all the other kind folks to help see me through this.
I am so happy for you that he is in a good place. I was so worried about you both for a while. I didn't see how it could go on. Now you both can just enjoy the time you have left with one another without all the fear and anxiety. I know it must be hard. And you most likely weep after visiting him as I did every time I visited my father. Watching the decline is so difficult. I am so sorry but you did all you could for him at home and you deserve at least some peace now. Reconnecting with friends and going out for walks are vital for your own health and mental well being.
Hi Roberta. Thanks for your encouraging, kind words. When I look back, I can almost feel how frightened I was for both of us. I just didn't see how there could be a good, safe outcome. The escalation scared me, and I knew it wasn't safe for either of us.
You are absolutely right; now I can see him without all the fear and anxiety that was such a big part of our world.
You too, know the heartbreak of a loved one with dementia. I think that as caregivers we can find strength in knowing that we did, and are doing the very best we can. And that is all we can do.
Yes. I see. Our agitation and aggression meds are helping a lot and worse slowly very slowly grows. Our annual volunteer 3 day check up and "suggestions" will be in a few weeks. I pay close attention to how you cope and your news today is basically good. I think about crying a lot and never do it after my sainted mother passed on, my eldedst son took his own life due to bi polar disease, my other son lives far away with epilepsy and his wife a doctor of child psychology wont allow us to see our grandchildren. It's not a macho thing with me not to cry. My father "spanked" me as a child, quite common and when he first used a belt on my bare butt at age 8 I decided I'd never cry which only infuriated him. Now I still just cry inside. Oh I forgot my first and only. I was at our bank trying to explain my wifes screwed up check book to a teller and former student of mine. I was having having trouble explaining the problem and blurted out "well my wife just physically attacked me today for the first time" and started crying in front of about 20 bank patrons and employees. She led me outside and proceeded to give me a bunch of hugs and encouragement. She and other former students, my druggist, my nurse practioneer, an a few close friends and neighbors help in lots of way and I don't even have to cry...:)
Oh Ray, thank you so much for sharing. You've experienced a lot of heartbreak in your life, and it looks like you are still in the midst of some tragic life experiences. I can't imagine what it must be like to not be able to see your grandchildren.
During my very first session with Dr. M., I remember her saying that it was perfectly OK to cry. She has a box of Kleenex sitting right next to the chair. She reassured me that it's good to express what you are feeling, and many times this include some tears.
I'm so glad to hear that you have some positive folks in your life; your former students, your nurse practitioner, your druggist and close friends and neighbors. And don't forget about your friends in the blogosphere!
Take care Ray, and keep in touch so I know how you and your wife are doing.
I'm happy that you're able to take your walks in nature-- that in itself is so helpful for your emotional health. How sweet that Jim is still able to recognize you and tell you he loves you. I pray he never fails to recognize you. I'm also grateful that your life is evolving at a pace that is slow enough for you to adjust to the changes that are occurring. Have a blessed Christmas with Jim. You both deserve it.
Hi Carol. I missed being able to be outside and active. To be able to have this back in my life is pretty wonderful. I find I am more at peace when I spend time in nature. It clears my head and helps me to focus on the goodness that is part of our lives.
Yes, it definitely is an adjustment. The evenings are the hardest and when I find myself missing Jim the most. And the shorter days of winter along with the cold and the snow don't help.
But then the morning comes and I plan my day around when I will go to spend time with Jim. Things always look brighter in the morning!
Hoping you and Robert have a wonderful Christmas too. It's always good to hear from you.
This entry is so affirming for me, as I look ahead at eventual residential care for my partner - thanks so much for the detailed accounts, of what's happening and how you are doing with it all.
Also, the list of what has happened in each new stage is very helpful indeed.
Enjoy the outdoors, and being able to connect again with old friends!
Sometimes it almost seems surreal. This can't be happening, can it? All the plans and dreams for a shared peaceful retirement....well, dementia upended it all.
Thanks for your comment Jabberwalky. Your insight and you friendship has helped me on this journey, more than you'll ever know.
Just your presence here is good for me. Thank you so much for writing.
Hi Mage. Thanks for stopping by. I'm glad that my blog is helpful to you. Thanks for letting me know :-)
Hi Carole, I always watch for a new post from you. Yours and Jim's love for each other is so touching, warm and sustaining for both of you even as this disease progresses. It is more than wonderful to know that Jim is so content and peaceful in this facility, good news not only for you and him but for each of us who may face having either a loved one in a facility at some point or being there ourselves. I'm so glad you are getting the support of good therapy to help you work through all the emotions surrounding this situation. I've had years of therapy and the support and opportunity for understanding and growth it provides is wonderful. Best wishes to you and Jim for continued peace and love on this journey! Becky
Hi Becky. Thanks so much for your comment and your best wishes. I saw a friend of ours earlier this week and he noted that he could not believe how much better I look. He commented that the stress from the 24/7 caregiving is no longer evident by looking at me. I would have to confirm that! While the stress is still there, I am feeling so much better.
As you point out, good therapy can make the world of difference. I feel so supported and know that I am in a safe place when Dr. M. and I talk. It's doing me a world of good. Some of it is difficult emotionally, but all towards an end of helping me to be a better person.
Your updates are so heart-wrenching; yet so human, so full of love that it's hard not to feel uplifted by them. Thank you for sharing.
Hi Tom. This story is such a human story, filled with emotions and feelings. I feel fortunate that I have so much help and support along the way.
know that there are so many, many others out there who also are having a difficult journey with dementia, but may not be able to garner the support they so desperately need.
I remember reading (can't remember where) of a woman whose husband developed dementia. She closed off her life, choosing to stay at home and care for her husband all by herself. She never allowed friends or family to visit.
We have medical and social support for so many diseases, but not so much for dementia. I'm grateful I had the wherewithal to seek the help that I needed.
I love the comments section of my blog. To hear from others, to know that they are listening and caring mean.s the world to me. Thanks for your comment Tom
I’m so pleased to read of how life is now proceeding for you, and Jim is so content in his setting. Love prevails however the words he speaks emerge. Perhaps on some level he is relieved, knowing you are better able to care for yourself though he had been unable to verbally express those thoughts. May nature, friends and family, counseling continue to provide you solace, comfort and pleasures in life through the days and years ahead.
Hi Jo Ann. You haave touched my heart. Thank you for your kind words. I just returned from spending the afternoon with him. Christmas carolers came by, christmas cookies and punch made it all the more festive. The hardest part of my day is when I leave to go home. I never say goodbye; I simply kiss him on the cheek, tell him I love him, and tell him I'll be right back. It works like a charm. Neither of us is traumatized by my leaving. His short term memory is so poor, that he is easily refocused on the activity at hand. I'm so grateful for his contentment.
It's a good thing that you are spending time with friends and with Jim. It's natural to grieve.
Hi Gigi. I'm so grateful for my friendships! Their support is helping me through this difficult time in my life.
Hi Carole. Grieving is such hard work, and in your case you are losing Jim bit by bit. I am glad that you enjoy many moments of love, caring, and connection with Jim, and that he is content in his new living situation. I’m also glad that you are taking care of yourself, with walks, time with friends, and counselling. Still, I am sure evenings and special holidays are extra hard — they were for me when I lost my husband. Sending warm thoughts,
Jude
Hi Jude. Thanks for your sweet comment. You are absolutely right, the evenings and special holidays are the hardest. Lately I've been thinking about how much I miss the emotional closeness we had for so many years. The kind of closeness that you experience in the moment, when you are sharing together one of life's wonderful experiences. I think back to our joy in sharing the great outdoors, traveling together, and even the ordinary planning for the future, sharing the everyday happenings.... I really miss that.
The loss was so insidious over the years, I've almost forgotten what it was like as we shared the closeness that comes from everyday experiences. Sometimes I think that I am romanticizing the past; maybe I am.
I always appreciate your perspective Jude, as I know that you too, experienced the great loss of losing your husband. Hoping you have a peaceful holiday.
Post a Comment