Friday, February 2, 2018

Dementia Update

It's cold and snowy today. I'm scheduled to meet with Dr. M. this morning, but I will need to postpone it until next week. It's nerve-wracking to drive when the roads are this bad. The plows and sanders are out, but with the rate of snowfall (which is scheduled to continue until tomorrow morning) and the very cold temperatures, the driving will be hazardous. Especially on the hilly terrain that is part of my route.

I recently updated Jim's progression of his dementia, which you can view here. The care home continues to be very responsive to Jim's needs. They have agreed to supply the gray pull-ups for him to wear. This white ones were never acceptable to Jim, and it was a source of anxiety and anger when it came time for him to change.

Jim's gait seems slower to me. When we walk the halls, he frequently will rest his hand on the railing along the side of the wall for a little extra support. There are a few new residents whom we are getting to know. Yesterday the manger of the unit put a stop sign on Jim's door. Apparently there is one resident who likes to open Jim's door when he is sleeping and proceeds to poke him, trying to wake him up. Manager is hoping the stop sign will deter this resident. I so appreciate their attention to detail, looking for solutions to prevent potential problems.

Since writing my last post, I've thought a lot about the difficulty Jim's brother has with communicating with Jim. As I read what I wrote, it now seems harsh to me. I appreciate the thoughtful responses to the post that helped me to be more sensitive to how difficult it can be for many people to interact with someone with dementia.

As mentioned before, our house is on the market. There have been a couple of showings, but no purchase offers yet. It's a rough time of year for moving real estate, but things always pick up in the spring.

As I wrote this morning in an email to my friend Jabberwalky "It's funny, but I'm definitely disengaging with our house. I kind of feel like I'm just a "holder" until someone else moves in. It's hard to be here, as everywhere I look, there are so many memories and reminders of what I no longer have - a home with my life partner."  

Sad as it is, I think it is a healthy response and helps me to move on with my life as I need to, given the current reality of our situation.

I have a friend who lives in New Hampshire. She and I have been friends for many years and actually worked for the same agency in the 1970's. After she retired, she and her husband moved to NH. But we always kept in touch over the years at Christmas time with cards and notes. Last Christmas I shared with her about Jim's dementia. Imagine my surprise when I received some specialty fudge from Provincetown in the mail! She was reminiscing about a trip to Cape Cod we took together many, many years ago. Such a thoughtful way to reach out to me to let me know she cares.

Fellow blog writer Alice wrote a great post yesterday. The dementia journey is different for each of us, but the bond we share as caregivers is so important; it helps to know that we are not alone.

Thanks for stopping by. I so appreciate each one of you!

20 comments:

  1. Hugs to you. I care.
    The almost last time we visited our friend Duck, he greeted us at the door to his nursing home. "I have to go Christmas shopping today," he told us. Very insistent. He was right. He died within days of this visit.

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    1. Hi Mage. Thanks for your hugs and for caring :-)

      Duck was lucky to have your friendship. I'm reminded that while the person with dementia may not remember specific events or conversations, he/she will remember how we made them feel. So comforting!

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    2. Your story made me remind me of my mom in 2016. Mom spontaneously began sleeping almost 20+ hours per day. This was before the severity of dementia increased. I would force her to get out of bed, concerned about dehydration. She would get up and as soon as I left, promptly went back to sleep. I think one time she slept 2 days in a row before I could get her up. Now I see the sleepiness as a precursor to full onset of dementia. Maybe it was her body's way of dying...becuz all that sleeping is what happened right before she passed. She literally never woke up after about 5 days before she passed. Of course she had nothing to eat or drink. I realized our body knows how to live, i.e. breathe, pump blood, etc. But it also knows how to die if we let it occur naturally w/o intervention. -N

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    3. Thanks for your comment N. And thanks for sharing about your mom. You know first hand how tragic this disease is; one without any hope of a cure. Hopefully someday a cure will be found, but not likely in the forseeable future.

      I love that we can come together and support each other. As this cruel disease takes its toll, we lean on each other to get us through this difficult journey.

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  2. The mind has a way of coping with things that we never really consciously think about. We recently sold a house, too. Notice I didn't say "home". Once you make the decision to sell, it really does just become a house, not home any longer. One more coping mechanism to help ease the transition, and in your case, pain.

    I love reading your blogs. (I am the one with the 86 year old mother with dementia.) Thank you for posting.

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    1. Thanks so much for your comment. It's interesting, the shift from home to house.

      Wishing you well on the dementia journey with your mom. I'm so glad that we can reach out to each other for support. Take good care.

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  3. Sure hope the Stop sign works. Sadly there is no way to lock the intruder out.
    I do hope you can sell your house soon so that you can get on with your new normal.
    Know we care about you and Jim and are wishing you calm waters.

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    1. Thanks Patti. It means so much to me to have such wonderful support from you, and from all of the kind readers of my blog.

      There are definitely challenging behaviors on the dementia unit. Jim is pretty quiet and doesn't upset easily, unless he is provoked. Staff are good at being proactive, but as you might imagine, they are stretched as they do their best to care for these folks.

      The snow should stop overnight, so hopefully the roads will be clear for driving. I miss him when I can't see him! Plus, he'll heave a 2 day growth that will need shaving :-)

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  4. Thanks Carole. I found all the links very helpful. I never knew the technical Stages of dementia but intuitively. I knew Barb was "slow' but always thankful for that. Stage III MCI was about six years ago. Barb demanded diagnosis before that and I and doctors pooh pooh it to normal ageing. We were wrong. The MCI diagnosis brought us to Mayos six week Habit program were we learned, patients meet psychiatrist, we did computer program and caretaker me as a group with people from as far away as Denmark. Most complain how hard it was to get their spouse or parent to acknowledge the problem or commit to Habit. I had to say Barb acknowledge the problem and demanded help. Now we are in the later part of Stage 4 and Barb is a volunteer patient in Mayos Alzheimer dementia research We now still function well most day but most of the bad symptoms of State 4 and Stage Five are evident. I began today during our daily exercise program claiming a sore back watching her from a distance and telephoning county social services. It's hard to get away safely for her and me as well so devious means are used to avoid agitation and threats of me plotting to put her in a nursing home. My 20 minute conversation for respite brought me the bureaucratic shuffle until she finally offered to locate some possible local sources to call. We live in a poverty county. Mayo is Rochester MN has a county with many sources of help though its further away I may have to turn there for help. It will all happen and Barb and I will persevere. And I will continue to read about more of Lifes Little Surprises and be ready for them....:)

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    1. Hi Ray. Thanks so much for sharing. Your story touches me, and I wish there was more I could do to offer you support.

      I'm glad that you reached out to county social services. Don't give up! It's so frustrating to be in such a vulnerable position, and then have someone give you the bureaucratic shuffle.

      As you know, you have a long journey ahead of you and you need to gather some support to get you through this.

      One other resource that you might want to inquire about; many counties offer day programs for those with dementia. It might be just a few hours a day, but it is long enough to give the caregiver a break. Check out this website https://www.alz.org. They have a toll free number that you can call. They will be able to help you identify local resources for you.

      Hang in there Ray. It's always so good to hear from you. My heart aches for you. Remember you are not alone, and your instincts to reach out to others is a good one. Take care.

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  5. You seem very positive now, Carole. I am pleased about that. I read about Jim's slower walking and it reminds of the times when I hesitate to put a foot forward. It shows that my brain is not as alert or confident as it once was, only to be expected at my age.

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    1. Hi Valerie. Yes, you are right. I am definitely more positive, especially compared to last year. 2017 was perhaps the darkest year of our life. I look at 2018 as a year of calm and control, two things that seemed to be out of my reach last year.

      Thanks for your comment Valerie. I really enjoy your blog! Your creative writing skills are just amazing, and provide a source of joy for those of us who visit.

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  6. How utterly difficult and sad life must be for all who are still doing this journey, both the sufferer and the carer. I feel that I have come out from under the weight of the, at times, unbearable darkness and can begin to take myself back to the good years.

    I am so glad that you are attending to your own needs too. All I would say is that you must think carefully and not act hastily over any decision. Do whatever feels right to you, without pressure, without letting circumstances alone influence you.

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    1. Hi Friko. Thanks for your kind words and thoughtful advice. I remember hearing that once a spouse dies, you should make no major decisions for a year. I think the point is to let things settle down a bit, and allow yourself to not be clouded over by the grief.

      Of course Jim is still very much alive, but I sometimes feel a bit like a widow. The grief, feeling alone; all things that you, Friko have lived and are still living.

      Finances are driving the sale of our home. The financing of Jim's care is expensive and complicated, so I feel a bit pressured (by myself!) to proceed with the plan to sell.

      I think of you dear Friko, and all you have been through. I love your blog. I'm learning from you, as you traverse this new pathway in life.

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  7. Good morning! Thank you so very much for the dementia progression log. It's very helpful to know the signs and steps of this disease. Blessings to you and Jim.

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    1. Hi Carol. Glad you find the progression log to be helpful.

      Jim's dementia is a combination of Alzheimer's and Vascular dementia. For someone with a different type of dementia (such as Frontotemperol Dementia, Dementia with Lewy Body) the symptoms might look different. Alzheimer's is the most common, reportedly between 60 - 80%. But many times there is more than one type involved.

      Hope you and your hubby are doing well. Thanks for your comment Carol.

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  8. Carole, I hope all goes well with the sale of your house. It certainly is a major life change that represents letting go and moving on. Yet, I expect it is really tough, emotionally. As well, I hope it eases some of the financial pressures, and that you will end up in a financial situation that allows for you to have a comfortable retirement in the years to come.

    Jude

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    1. Hi Jude. You too, know about major life changes! My realtor commented that sometimes sellers have a tough time disengaging with their home. The financial piece makes all of this a bit easier to think in terms of the practicality. Thanks for your well wishes Jude!

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  9. Glad you were able to have the facility accommodate Jim’s preference for gray over white pull-ups. The different colors clearly has symbolic meaning to him. Seems like such a small matter that facility staff might never know, or be able to take the time to figure out, but makes a significant difference in his behavior and attitude. You’re truly continuing to make a positive difference in his life and adaptation to his situation which should be appreciated by facility staff, too.

    Hope all continues to progress with selling your house — your home will go with where-ever you ultimately settle all those memories you have with you.

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    1. Hi Jo Ann. Thanks so much for your comment. It gives me hope and contentment knowing that I am still able to be such an important part of his life. Sensitivity to his needs come easily for me, thankfully.

      Your last comment "your home will go with you wherever you ultimately settle, all those memories you have with you". Brought a tear to my eye. Underneath the practical part of me, focused on the mechanics of selling our home, is the emotional reaction to this huge move in our lives. Thanks for writing so eloquently what I am feeling.

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