The other day when I arrived for the afternoon he was just finishing lunch. He stood up, walked over to greet me, hugged me tight and said "Carole, I am so happy with you. Will you marry me?" Moments like this I will treasure forever. How lucky am I that he still knows me, still loves me madly, and is able to tell me every day how much he loves me.
Jim has had some new challenges. His incontinence is increasing and he wears pull-ups to protect his clothing. At home, we were just starting to have some intermittent problems in this area. At home he never agreed to wearing anything other than his usual underwear. But at the care home, I have removed all of his usual underwear so that the only option is the pull-ups.
I go to great lengths to disguise them. I've even purchased some on my own that are a blue/gray color, rather than the white. As I help him dress, I put the pull-up in the athletic pants so that he is not as likely to notice as he would if it involved a two-step process.
The other morning (I had not yet arrived) he struck a staff person in the face twice as she and another staff person were trying to assist him in changing after he had been incontinent with a bowel movement. I talked to the two staff who were involved. They were wonderful. I was able to express my concern for their safety. They both assured me that they were not hurt, and that these situations go with the job of caring for folks with dementia.
I am deeply grateful for such kind, caring and understanding caregivers for Jim.
My other thought on all of this is to imagine how difficult this change must be for Jim. At some level I am sure he is embarrassed. He also is likely upset and angry that he no longer has the control over all of his bodily functions. It must be so hard for him!
He is not always agreeable to showering. Usually I am the one that is helping him. I seem to have better luck than the staff at getting him to agree. I usually turn it into a light-hearted experience. I get the water nice and warm and then ask him if he wants to take a shower with me. His face lights up and he almost always says yes!
Once his clothes are off and he is in the shower, he is distracted enough where he does not question the fact that I still have my clothes on. I help him wash his hair. He can still wash his body, with some prompting and a little help with the soap.
The weather on the East coast has been brutal. Our neighborhood has not been spared. Thursday I had a nail-biting commute between home and the nursing home. The route there involves a very steep hill going down, and then coming up. I witnessed several vehicles trying to get traction, but unable to. The salt and sand doesn't work as well in frigid temperatures. In addition, the rate of snowfall made it difficult for the plows to keep up. The howling winds and blowing snow made visibility almost non-existent. Wind chill factors have been around minus 20 degrees Fahrenheit.
Here's a picture taken this morning from my window, looking out onto our deck.
I made the wise decision to stay home yesterday and today. We've had well over a foot of snowfall in the last two days with another 8 - 12 inches today. Tomorrow the snow will stop and I'll head up again. It is hard on me when I don't see Jim. I know he is well cared for, safe and contented. But I still miss him when I don't see him everyday.
I've met with a realtor and plan to put my house on the market in the near future. In many ways I am very pragmatic, and this decision is a no-brainer. The size, the expense and the upkeep are way too much for one person alone. But there is another part of me that realizes that I am closing the door on a chapter in our lives. A chapter that was full of love, life and wonderful experiences. Of course I know that Jim will never come home. He will never get better. His decline is inevitable. I'm stating the obvious. But on another level my heart aches. It's closure on a very wonderful part of our life.
I'm looking at possibly purchasing a condo not too far from here. It's about 1,000 square feet. Includes a garage for these terrible winters. I want to stay in the area so that I can continue to be close to where Jim is and where my friends are.
2017 was a year of turmoil, sadness and change. I look to 2018 as a year where my sweetheart is at last contented and safe. And I will do my best to cope with the challenges that life has sent our way.
Another post is written. Thanks so much for letting me share with you what is on my heart and on my mind. I'm so grateful for the amazing support I receive from each one of you!
27 comments:
It's good to know that you aren't going out in that horrific weather. Sweet proposal! You are fortunate he's remembering you.
Are they coming up with any new medications or procedures?
I don't envy you any about packing and moving.
Hugs!
Hi Sharon. So good to hear from you! No, there are no new medications or procedures that I am aware of. I know that for prevention, people are advised to essentially live healthy; good nutrition, don't smoke, good blood pressure and diabetic control, exercise and keep active.
And sometimes even with all of the above, someone may still be cursed with dementia; sometimes there are genetic factors.
But for those who are already diagnosed, the disease is progressive. No interventions or medications can stop the course of the disease. So cruel!
Hopefully some day there will be a cure. Until then, we can only love and care for those who are afflicted and support their loved ones too.
Sending hugs right back to you Sharon! :-)
It was a wonderful move for the both of you that Jim is in that facility now. A lot of the pressure and stress has been removed from you both and you can enjoy the good times.
I am glad you are being careful about driving in the mess you are having to deal with. We have the cold here but no snow. I feel for you.
His proposal was so sweet and must have made your day. Love has a long memory.
Hi Patti. Oh, I love what you said "Love has a long memory". It's so true! When he holds my hand, when he hugs me, and when he says such sweet things, it just makes me love him more! It's a tender sweet love that is coming from the depths of our souls.
I'm sure that I romanticize our relationship to a degree. Somehow I have pushed way down the incredibly stressful things that we somehow lived through last year. All I have to do is read my posts to be reminded of that very rough patch. But I think that having a selective memory is OK. It is one way of coping with the heartbreak of the disease.
Thanks for your comment Patti. Let's hope that this cold snap breaks soon!
Thank you, thank you for sharing your journey with us. You are such a loving and kind spouse. When I talked w/ a social worker at a long term care facility a lot of the residents get no visitors even if they're married or have kids. Too many are literally abandoned. Your love story is so tender and touching, after all these years. It's so wonderful to read a good married story these days, even if it is tragic. Your story always brings a tear to my eyes. I had to sell after mom died and though I only lived there 4 years and wasn't really connected it still felt sad when I knew that was the last time I'll ever go 'home'. But I found a much better and easier life now, it's an all new chapter and I finally have peace and quiet now. I deserve this and I revel in it. Yours will be a harder journey but there will be pluses, like less time spent on cleaning for one thing. I can clean my place in less than 1/2 hour. Just FYI today, Gene Wilder's widow wrote an essay on dealing with Alzheimer's as Gene Wilder passed last year due to it. It's not a lot of personal detail but she's focusing on the caregivers. http://abcnews.go.com/Entertainment/gene-wilders-widow-care-alzheimers/story?id=52045475 God Bless you and Jim!
Thank you for posting, and I'm glad you stayed out of the weather. We watch the snow and winds on television and are really grateful for where we live. Our friend Duck fought going into a nursing home. We let him go to his apartment for a short while, but he kept falling. At the hospital, he walked out the front door thinking he was in a cruise ship and they forgot to tell him the ship had docked. They were able to place him in a home for observation then. Saved his life for a few more years. We were very grateful too.
Stay warm and safe.
Thank you so much for your comment! I will definitely check out the link about Gene Wilder's widow.
Even though it will be sad to sell our house, I will be glad to have less responsibility and less expense. Less cleaning always sounds good to me :-)
I'm so glad that you have found peace following the passing of your mother. I know that you, too, had many challenges along the way with the care of your mom.
At the care home, there are two spouses that come every day; me and Sandy. That is not at all to be judgmental, but rather to reflect that every circumstance is different. Sandy and I both happen to be relatively young for having a spouse in a care facility. I think that for others, there are often competing needs such as work and other family obligations.
For the folks at the care home who truly are without regular visitors, the staff and other family members reach out to the residents to make sure they feel loved and cared for.
Wishing you continued peace in this new chapter of your life.
Hi Mage. Just walked down to the mailbox and am so glad I'm staying home today. Glad you are in a warmer climate.
Sorry to hear about your friend Duck. I'm glad that he eventually received the help he needed. When I think about the confusion that folks with dementia have, I try to imagine how scared I would be if I couldn't make sense of what was being said or what I was observing. I could see the fear in Jim's eyes when he was still at home; he would see things that were not there or he had difficulty processing what he was seeing.
But now he is safe, in an environment that is designed specifically for those with dementia. I'm grateful every day for this safe haven.
Thanks for your comment Mage.
I don't know why I thought you were in a warm climate. I am sorry you have the bitter cold to deal with as well as the sale of your house. You have a lot on your plate. Be kind to yourself. Sending good thoughts for the new year. I know it is not a happy one for you with all you are going through.
Hi Roberta. Prior to this winter, Jim and I spent the winters in Florida. It was a good balance. Enjoying the beauty of central NY during Spring Summer and Fall, and escaping the harsh winters.
As sad as it is, it will be a relief to not have the worries that go with a large house on an acre of land. If my plans go through for the condo, HOA fees will take care of exterior maintenance as well as plowing and mowing.
Thanks for your well wishes Roberta. I so appreciate you and the other kind readers of this blog. When I started this blog (almost 2 years ago!) I never dreamed that the blog and the readers would be such a wonderful support.
You are wise to stay in the area and close to Jim, especially now he has proposed. I loved that part of your post and I hope the proposal brought you great joy. It proves that you are in his heart at all times.
Hi Valerie. His proposal melted my heart. Jim may not remember that we are married, but he remembers and feels his love for me. I'm so fortunate! Jim is still such a big part of my life. Seeing him every day gives me great happiness. It looks like it has stopped snowing, so once my driveway and the roads are plowed, I'll head over to see him today.
Thanks for your comment Valerie.
Carole you are so right about how Jim would probably feel embarrassed if he knew about his incontinence. One hard thing about AD is the lack of a timeline. Every person is so different. My husband's memory is crashing now but activities of daily living ( hygiene, cleaning, yard work) are still intact. I am waiting for the moment they start to go. It is like being at the top of a ski run and wondering if you should take your time and traverse back and forth of go for it! It could be 6 months or 6 years. Makes planning very difficult. He realizes he has no memory any more and apologizes for it and that makes everything sadder. Friends look at him and even they know his diagnosis they still can't believe all that he has forgotten. So, so sad. I have a feeling that 2018 will be the of antidepressants ( for me, not him ).
Hi Karen. Thanks for your comment. I'm so sorry about your husband. You are so right about the difficulty in planning for the future. While we know that decline is inevitable, the pace of the decline is so uncertain.
I think the other thing that makes it all so difficult is that while the person looks "normal", and functions fairly well, it is often only the spouse who sees the true nature of the decline.
Hang in there, and keep in touch and let me know how you are doing. Take care Karen.
You were wise not to go out in the super storm. It would have been dangerous. Jim is safe in the care home and you need to be too. Selling and moving will be stressful, but in the long run you will appreciate the downsizing. It will be another chapter in life's journey.
We're in the process of selling our winter home in Arizona. Last year was very difficult for us and we're not at all sure what my husband's health is going to be like. Like you, we have to be very pragmatic and make our choices accordingly. It's nice to read about Jim's and your love for one another. Be well, and know that although letting go of your home is painful or sad, it's a decision well made.
Hi Christina. I just got back from visiting Jim this afternoon. Temperatures are better (17 F), it has stopped snowing and the main roads were in pretty good condition.
Yes, another chapter in our lives. You are right, that is all for the better in the long run. I actually look forward to have less to be responsible for as a homeowner.
Thanks for stopping by Christina.
Hi Carol. It's difficult, isn't it, when life throws us a curve ball that we just didn't see coming. It must be an especially difficult challenge for you, as you are selling your property long distance.
When I saw Jim this afternoon, he was so happy to see me. He had quite the beard stubble, so we worked on that. A shower and clean clothes followed, and then we were ready for lunch. It was hard to be away from him for 2 days, but the reunion was extra sweet :-)
Thanks for your comment Carol.
I think that buying a condo with covered parking is a good idea. My in-laws live in Massachusetts and might move from their house into a condo also.
Hi Gigi. I'm hoping it works out. The garage was a top priority for me. I remember when I was in my early 20's having to shovel my car out to get to work!
The HOA fees cover outside maintenance, including landscaping, mowing and plowing. Fingers crossed that the timing works out for everything.
This post made me smile...:) I haven't been quite that lucky yet. Most frequently awoken in the morning to questions like "are you my father or my husband?" Sometimes it's "are we married?" My response might be "well as a lifelong Catholic dear if we're not we must have been living in sin for 52 years now." When she laughs I know another day has begun as well as it can...
Hi Ray. Oh my goodness. I'm glad you still have your sense of humor :-)
Living with dementia is full of surprises, isn't it. It sounds like you have the right temperament to be such a support to your wife. But even with patience and the right attitude, it can still be so difficult at times. I know you know this only too well.
Hang in there Ray, and thanks for stopping by.
I love knowing that the memory of the love you share is still intact.
Hi Kay. I feel so lucky! The essence of who he is shines through :-)
Karen, that's just the position I'm in with my spouse - pretty good self care, and an amazing ability to rise to the social challenge if someone visits or calls - such that they have a hard time believing me, unless they spend a lot of time with us. And that uncertain timeline, exactly what I'm facing - it's been 5 years since diagnosis, and are we going for 2 or 10 more??
The caregivers at Jim’s facility sound just wonderful, and you are such a loving thoughtful partner to him. You have done everything possible to make the progress of this cruel disease easier for him. I hope things go well with the sale of your house and purchase of a condo. Even at the best of times, moving can be hard, but I think it will feel good once it has been done and you are settled in your new place.
Jude
Hi Jude. Jim's birthday is this weekend, so we will have a very small and low key celebration with his brother, and Mike and Sally, our dear friends. Jim doesn't remember it's his birthday, but he will enjoy our "in the moment" experience.
My counselor had a good observation. By moving now, while the essence of Jim is still there, the transition will be a bit easier. With Jim's eventual and inevitable decline, it might be harder to make a move at a point in time where I feel like I no longer "have" him.
Thanks for stopping by Jude.
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