Wednesday, March 14, 2018

Brain Failure

We've all heard the medical terms heart failure and respiratory failure. And it is crystal clear exactly what these terms mean.  I read a blog post the other day that offered a different term for dementia: brain failure.

Elaine Eshbaugh, PhD is a university professor of Gerontology and Family Studies at University of Northern Iowa. She is smart, spunky and funny. Best of all, she is the author of an outstanding blog called Welcome to Dementia Land. She offers insight, knowledge and an insider's look at the world of dementia, sprinkled with a touch of humor. This is her post on the concept of referring to dementia as brain failure.

She makes the point that for the uninformed, dementia is thought of as a problem with forgetfulness. Of course readers of my blog know that problems with memory barely scratch the surface of what dementia is all about. She suggests that for a fuller appreciation of the debilitating nature of the disease, that we should call it what it really is, brain failure.

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It's been a while since I have posted, and a  lot has transpired. I received a purchase offer on our house. After a bit of negotiation we settled on a fair price. I am purchasing a condo in a village not far from where I live now. The condo is small; about 1000 square feet. Just right for one person! The building is on the bank of a very active creek; it runs every day of the year. There is a small balcony off the living area overlooking the creek. Just beautiful!

Closing on both places will be in about 6 weeks or so. Lots to do before then! This is a major downsize for me, but I welcome the opportunity to live in a smaller space with less possessions. The Home Owner's Association monthly fee covers landscaping, yard care, snow removal, etc. There is an underground garage for parking with an elevator to the building's 3 floors.

The "walkability" of the village is very good. Grocery store, post office, library, all within an easy walk. There is a beautiful park in the village with lots of trails for walking. In addition, there is Baltimore Woods which offers acres of wooded hiking trails.

It will be good to be out from under the major expense and responsibility that come with owning our current home. If Jim were able to understand and speak to me of all of this, I know that he would be happy for me, and that he would reassure me that I am doing the right thing.

After last month's fiasco of the change in his medication dose, he has stabilized back to his baseline. I spoke to the Director of Nursing and informed her that I did not want Jim's medications changed. She was very sympathetic to what I said, but insisted that it is out of her hands; the government regulations require them to do this. She agreed that Jim needed to recover his stability, and that nothing would be changed "for a while". She also said that she would call me first, before any changes were made. I'm struggling with this. Someone suggested that I threaten to take him out of there. But I would never make that threat because I would never do that to him!

Jim's speech continues to be very minimal. One or two words. But his beautiful brown eyes speak volumes to me. As I see his face and his eyes light up when he holds me and kisses me, I know that I am a very fortunate woman. I have the love and devotion of my sweetheart. Doesn't get any better than that.

I'll leave you with a picture of the view from the living area of the condo I am purchasing.

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


30 comments:

Anonymous said...

This looks like a very special place to live. So glad you have found your next home. Best wishes with the move.

Carole said...

Thanks dkzody! Yes, I'm grateful to have found my next home sweet home. I'll take my cherished memories with me, which will make it all that more special.

Anonymous said...

Best wishes to you Carole. You sound strong and competent as you move through this challenging time. I'm glad Jim has stabilized and hope that somehow they can get around taking him off another medication. A senseless and unfair thing to do to him, and you. I'm so glad for the precious love you share. Becky

Valerie said...

Your new abode sounds delightful, Carole, and I hope the move goes smoothly. I presume you won't be too far away from Jim and that visiting him can continue.

Carole said...

Hi Becky. I don't always feel strong, but I know that I need to give myself some time to adjust to all these changes. It's been a rollercoaster of emotions at times.

I realize that a lot of how I feel is dependent on how Jim is doing. If he is having a rough patch, it effects me deeply. When I see that he is content, it goes a long way to helping me to keep my emotions in check.

Thanks for your comment and kind words Becky.

Carole said...

Hi Valerie. The move will add only 5 minutes to my drive, so still pretty close to him. I'm so fortunate that I can see Jim every day. The only thing that keeps me away is snow storms. We received another foot of snow last night! But the plows are good about getting the roads cleared.

DJan said...

It sounds perfect, and the picture shows a very peaceful scene. I'm glad it's working out so well for you, and that Jim is again stabilized. I just don't know why the care facility has to mess with his medications like that. I am glad you are downsizing. :-)

Friko said...

As you say, a perfect size for one and if it is as pleasant a place as you say then you are very lucky to have found it so quickly.

Nothing will be easy but being settled makes for a much calmer life. One problem off your mind, there are plenty of others. Good luck and the strength to cope!

Carole said...

Hi DJan. Yes, in many ways it feels good to downsize. I'm looking forward to enjoying village living, in a community of caring folks, while still having my own small space and privacy. I remember reading about your living situation and the relationships you have developed within your community. Hoping for something as good as that :-)

Carole said...

Hi Friko. Thanks for stopping by. I've lived on the west side of the city for most of my adult life. I'm familiar with the area, shopping, and most importantly it is where most of my friends and supports are. And close to Jim!

Thanks for your comment and your well wishes Friko. I think of you often, knowing that you too have walked the journey with losing a spouse to dementia. I appreciate your support.

Mage said...

Can you talk to his doctor about those government regulations. I am horrified by this.
The condo sounds perfect. I hope it isn't 3 stories tall. We bought one that is and I have trouble with the climb.

Carole said...

Hi Mage. My reaction is the same as yours! Once/if I get the call from the Director of Nursing, my plan is to request speaking to the physician first. If I am overruled, I plan to offer immediate feedback to them following any dosage reduction, so as to provide them with an "acceptable" justification for keeping him on his usual dose.

The condo is 3 stories high. But there is an elevator. I have an arthritic knee, so the elevator was an important factor. Thanks for your comment Mage :-)

troutbirder said...

It's encouraging how you've be able to adapt to your changing circumstance. As I peer into the future the though of some of the changes I'll need to make fill me with dread. Still what will be will be and I will adapt and change....

Carole said...

Hi Ray. Change can be so hard! A year ago I never dreamed that the dementia would progress so fast, and that I would be faced with so many decisions about Jim's future and my future.

I know you have some real challenges and plenty of uncertainty for you and your wife ahead of you. Hang in there Ray, and accept whatever support you are able to get along the way.

Tehachap said...

What a lovely view, and the sound of the water in the creek will be soothing. My only concern is does your unit have three levels? Are there stairs? I may have misunderstood the layout. I do like the idea of the closeness of shopping and walking trails. Nice! Glad the staff at Jim's care facility have agreed to call you before they change his medication. Perhaps you can get some kind of variance to these arbitrary regulations. One would hope, anyway.

Carole said...

Hi Carol! My unit is on the first floor. There are 3 floors to the building, but each unit is only on a single level. The elevator goes from the below ground garage up to each of the 3 floors. But my individual condo of 1000 square feet is all on one level.

I do hope you and your hubby are recovering ok from your respiratory illnesses. It's been a tough year for this type of malady. Take care Carol, and thanks for your comment.

Anonymous said...

I am glad you found a condo to live in. It sounds lovely.

Carole said...

Hi Gigi. Yes, I'm happy to have found a place that is "right-sized" for me, and yet still close to Jim.

Sharon said...

Glad that Jim has stabilized.
I am happy you found a place to move. I hope you will be comfortable there.

gideon sockpuppet said...

Carole, best of luck with the move. When we moved across provinces last year, we decided that we were not going to take everything with us. I found it hard to sort through and get rid of stuff, especially all of my boxes of career-related materials. It was very emotional moving on to the next stage of life. Your downsizing may come with lots of emotions too. I am glad that you have found a nice condo in a great location, with all those walking trails nearby. Settling in there will be something to look forward to.

Thanks for the link to “Welcome to Dementialand.” Her point about dementia being not just about memory loss, but a process of brain failure really states the matter well.

Jude

Carole said...

Hi Sharon. Good to hear from you! Thanks for your well wishes. I know that the timing is right for the move, but I still have my moments where it feels so incredibly sad. But I think that is natural, given the situation. Looking forward to when the move is done :-)

Carole said...

Hi Jude. I remember reading about your big move. It was a huge undertaking, especially going across the provinces! Yesterday I was sorting through some stuff and I found all of my paper calendars (remember those?) where I would keep track of my work schedule as well as my personal life events. I decided to just dispose of all of them. Today, no regrets over doing so. Trying hard to keep detached from too many physical things and focus on the memories.

Yes, looking forward to settling in. My friend Sharon lives close by, and we are already planning our hikes on the trails in the village park.

Anonymous said...

Hi Carole, How are you doing? You have been through so much. I am worried about no posts for over a month. After moving, you will be busy, you have to recover your energy. But I'm still worried. Sometimes people hang on and keep going as long as they have to, then collapse and have to take more time to recover. I hope you are well. (Email from work.)
Love and Concern,
Margaret in Vermont

Carole said...

Hi Margaret! Yes, it's been a long time since I have posted. I hope to get another post up in the near future.

My mom has had some health issues recently with another brief hospitalization. She's needed some additional support, so my brother and I have shared those responsibilities. I've been busy downsizing by about 75%! Quite a bit has been sold, but also able to donate many items as well. Closing date is still up in the air, but could be any day now.

I've been able to still see my sweetheart every day! Visits are a little shorter, but still grateful that I am able to spend time with him every day.

My house looks like a hurricane hit it! Boxes everywhere, but that's to be expected with a move like this.

Thanks for your sweet comment Margaret. Sending love and hugs right back to you in Vermont :-)

Tehachap said...

So sorry to hear of your mother's health problems. I hope she's recovered and feeling better. Like Margaret, I've been missing your posts and wondering if everything was alright. I'd forgot you were in the process of selling your home. Combined with your mother's health issue, I know why you haven't had time to post. Take care of yourself and write when you can. Hugs, Carol

Carole said...

Hi Carol! My mom is doing better; recovered from pneumonia and doing ok with her new chemo pill.

My house sold, I closed on a condo I purchased, and I'm in the process of having some painting and carpentry done on the condo. Hopefully by this weekend I'll be able to settle in, clean, arrange furniture and empty boxes. Oh my goodness, sooooo many boxes!

I hope to get another post of soon. Thanks for your comment Carol, hugs to you too.

christina neumann said...

I am glad too that things have settled down for you. It's a lot to go thru. Hope a post is coming soon. Best to you,Jim and your Mom ...

Carole said...

Hi Christina. Thanks for your best wishes. I hope to get a post up soon. Jim is content, and of course that makes me happy. Still a bit overwhelmed with getting settled, and some other things that have popped up just to keep it interesting of course!

Kay said...

Your new condo sounds like a perfect place for you, Carole. I love how you have a community close by that you can access easily. A home definitely takes too much attention and finance to maintain. I've been gone on a trip and just getting myself settled again. I did attend a Dementia workshop last week and really learned a lot about what it is and how to deal with it. There are so many challenges. You are the best of caregivers, Carole.

Carole said...

Hi Kay! Thanks for your sweet comment. I remember you saying that you had a parent with dementia, I believe. I'd like to think that awareness is increasing. Every opportunity I get, I try to educate and share with others what I have learned.

I'm starting to think of my new place as my "home sweet home". Jim is here with me in spirit, and remembering that helps me to stay strong.