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Life as a Caregiver

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One year anniversary in the nursing home

My husband’s one year anniversary in the nursing home was last March 13th. I had decided that then would be a good time to update my blog but every time I start to write I get distracted or plan frustrated because I cannot seem to get all I want down in black and white. So while I wait for my night time meds to kick in maybe I will be successful in updating our lives.   The decision to place Dick in a nursing home was not an easy one. I think I fantasize about bringing him home at least onc

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Its All About Give and Take

Years ago, when I was home schooling five children, I often felt the need to get away from the kids if only for a little while. At that point we lived in a tiny Illinois community so that you had to travel 45 minutes at least to do even do basic shopping or Dr. visits. I loved my children and at that time we were doing an especially absorbing study on medieval Europe. To most people it must have seemed I had a rather idyllic life. The children’s father travelled a little over an hour each da

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Up Coming Care Meeting

Ever find that you have kept far too many concerns too closed mouth and just HAVE to dump all of them out on someone? That is where I was yesterday. I have no support network. My children are young adults and just do not “get it” so I rarely use them as a sounding board when it concerns Dick’s care. In addition to their youth, they tend to want to protect me from having concerns about Dick not realizing that that actually adds to my distress. Therefore I periodically spew everything out on

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Running on Empty

Anyone who knows me or has read my blogs will know that things have been difficult since the end of February. Few people, if any know the whole picture. That is the nature often of any caregiver

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Now what?

Holidays, graduations, out of town guests, kids coming, kids going, meetings, appointments…! April and May hit like a tornado and things have yet to stop spinning. As the saying goes.. the hurrieder I go the behinder I get. I didn’t even look at my computer for a month and a half and I only got a few peeks a week the rest of the time. Then – nothing! I have only one thing on schedule for the rest of this month.   Now I am wondering what to do next. I have shared my journey since last f

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Looking Back or The Countdown

I am in the midst of my annual count down. This year it goes something like, seven years ago I…. I don’t quite know why I torture myself this way year after year. Some years it really does not bother me too much and I have actually thought I was coming to grips with post-stroke life some years. I guess because of all the difficulties over the last few months I am feeling the countdown more keenly.   Seven years ago the beginning of October, Dick and I headed south in our 40 foot motor home

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Simplicity

It seems that the most common courtesy this time of the year is to ask, “How was your Thanksgiving?” Never much noticed that before but since yesterday I ate my first solid meal in over two weeks I noticed the irony this year. I had three of my five children home and I entertained them from a hospital bed. And poor Dick spent the entire time alone in the nursing home. Not a good start to a season known for good cheer, but an opportunity none the less, to reflect on the great benefits of bein

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I just got beat up, jumped on, kicked and left for dead.

I just got beat up, jumped on, kicked and left for dead. At least that is what it feels like. A well meaning friend called this morning because she had heard my husband was in the ER yesterday. Though I have known her a very short time, I have appreciated some of the support she has shown. In fact last week she ran to the store for me when my husband was too sick for me to leave him. However, this morning she was like a steam roller. She told me what to do as far as doctors and when I trie

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The Good and the Bad of a Less than Good Week

My daughter took me to see Dick tonight. I hadn’t seen him in a week and missed him badly. Today I had gone through some of his clothes still in my closet and cried. I missed my old friend so much and I missed my current love as well. I was so thankful for that few minutes to hug him, hold him and get him to bed.   I have spent the last four days in the hospital (here we go again). I finally just couldn’t take that anymore and said I needed to get home. So the issues are still not cleare

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Unexpected Outing

I know that I just posted a blog this week but we had such an unexpected day that I just had to share.   Yesterday was an extremely busy day for me. I had Physical Therapy in the morning. It didn’t take that long and I figured I could fit in an hour and a half visit with Dick before my appointment with my back specialist. When I got to Dick he was asleep. I rarely try to wake him because waking him suddenly leaves him especially confused. Gradually I got him to wake up but he was nearly u

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Heartache vs. Hope

For those who only like to read upbeat happy blogs, you may as well stop reading right now. For this will not be an everything is rosy blog but rather a cry of anguish from a broken heart. Stroke sucks. It robs a couple of life as they knew it and turns the relationship on end. But with stroke somehow there is always hope. There is always room for improvement. There is always a new life to be built. But when vascular dementia enters the picture it seems that even hope is taken from you.

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I did not see this coming!

I have been trying for the past half hour to get my daughter to get out of bed..well wake up because she fell asleep on the living room floor again! She is home for the weekend with the goal of digging out her bedroom. She has the largest room in the house and it is almost like an episode of Horders! She is a beautiful and talented college student so is rarely home and her room has become a storage room of dumped crafts, clothes and memorabilia. Then she had a cat that lived in that room nigh

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Communicating Love

My husband has aphasia. He used to talk all the time and tell me tales of his past and the history of our home town. He never seemed to meet a stranger but always found new friends to talk to. I loved his voice. There are times that I ache to hear that voice again. Not only have his words been lost but also the tone quality of his speech is gone. Due to a series of strokes and vascular dementia his ability to communicate continues to decline.   But he can sing.   The other day a son

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It all in the little things

Today is my birthday. For the past few years it was common that no one remembered my birthdays. Certainly not Dick. This year was different. I guess because of Facebook so many friends were able to share a Birthday note. It was a small thing but I appreciated it. My youngest came up first thing with a gift of a Sweeny Todd movie. The older girls tried to be the first to congratulate there old lady by calling just as the clock past midnight. Nothing big nothing showy but somehow just havin

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The winter through, near death and nursing homes pt 2

2nd part of blog posted earlier As I grew stronger I realized what a horrid place Dick was in. In the original wing where he spent most of his time there, they did not understand his dementia. They would get aggressive with him and he in turn became aggressive. They took his cane away

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So much to do so little ____ !

Well, here sits the queen of procrastination. There are so many things I needed to do this week so I keep putting off calling the Ombudsman about Dick’s care in the nursing home. I have spent hours talking to the staff and getting his summer clothes photographed and printed up a detailed inventory. I gave multiple copies to the nursing home with a list of all the items that have been lost since January. Now I will see how long it takes them to reimburse me for those losses.   As to care, I

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A day at the oasis

Living with vascular dementia can be like living in a dessert. You can feel lonely, parched, weak, confused, lost and even be tempted to give up. But just when you think that you will not survive you stumble upon and oasis. There you can refuel and rest for a time before continuing your journey. Sunday we stopped by an oasis in dessert dementia.   Actually we had found the oasis on Saturday night. My husband seemed to be pain free and ready for small outing so we stopped by Dairy Queen t

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Decision Made

The decision is made. Now comes all the second guessing and self-doubt and the.....   I decided that the time has come for my husband to be moved to a nursing home. This is one of the hardest things that I have had to do since his stroke Jan 2, 2005. I have fought hard to keep him home and give him the best life I could. However, his vascular dementia is progressing and people are getting hurt. I guess I have pushed myself to add this to a blog just in case someone else reaches this point

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Merry Christmas

A Big Merry Christmas to everyone. As we approach the 5th annaversary of Dick's stroke, I am so thankful for the successes we have had.   Dick has done well enough for me to venture taking a trip with him. We are spending this holiday season on the beach in Alabama. We left all the snow behind and are enjoying our white (sand) Christmas were it is warmer. It is a bit of a victory celebration. Even this summer I did not believe I would be able to take Dick on a vacation again. However,

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Vacation and strokes

Summertime is when we often expect to get a bit of a break from the normal busy routine of life. Not so for us this year. While my daughters are usually gone for half the summer, one decided to stay home which has meant that we have become sleepover central and teenage transit authority. You can imagine then how I was looking forward to a restful vacation.   We have discovered the perfect vacation spot for our family where we can all find entertainment to fit our abilities. It is a Christ

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Refreshed in and unexpected way

Today has been an amazing day. OK so it just hit mid-night so I guess I am now talking about yesterday. I am still awake just reviewing everything that happened and trying to process it all. The irony is that most of the day was taken up by a funeral!   OK funerals are NOT at the top of my like list. And this funeral was of a ninety year old woman whom I called “Mom” through my teen years. I will miss Gay so much but I believe that she is in a better place. I have felt every emotion in t

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On Being Strong - or Not

I have often been told how strong a woman I am. When it is pointed out to me I have to admit that at times I amaze myself with what I have been able to accomplish. Most of the time though, I do not feel strong. At the worst of those times I even resent being told that I am strong. Maybe the real issue is that I do not want to be strong. I want to give up. I want someone else to take over and be the strong one.   It seems that I have always been the one making things happen. In my first

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