Ten years of aphasia

LilySue

DH and I have been married for 55 years. We were married in June right out of college and we both started our teaching careers that first September. DH was a teacher, a varsity baseball coach, a middle school counselor, assistant principal, and then a principal until the political nature of his job became too burdensome. He finished his career with 30 years as a very popular and loved high school counselor. He enjoyed six years of retirement, golfing and organizing his vast collection of baseball cards, before a stroke took away all language. He was left with total global aphasia meaning he had no expressive or receptive language, a disability most cannot imagine.

Two days after the stroke, while still intensive care, a bedside manner-deprived neurologist unemotionally stated, “Your husband will never be independent again.” Our adult children and I were devastated. As I was still working as the principal of a private school, having been in that position for 30 years, I hired a young man to be with him during the day.

For the first two years he could walk, feed himself, was continent, and seemed to enjoy being outdoors. I took him out to dinner, we went on walks, even took a trip to Hawaii, and while life was far from perfect, it was not horrible either. He couldn’t communicate at all, but we lived life as best we could. However, after two years of daytime caregiving, it became apparent that I could no longer be alone with DH at night. He was up and down, walking around, I couldn’t sleep and was constantly worried about what he’d do, where he’d go. We had a GPS for him and special locks on the door, but none of that solved the problem of my worry and sleeplessness. Very fortunately I found a young married couple who were caregivers with green cards from the Kingdom of Tonga who expressed an interest in moving in with us. Our house is big enough, and they turned out to be an amazing fit. They quickly became “family” and now, after eight years, they have had two little boys and we have two more grandchildren. I know this isn’t a solution for everyone, but it has worked for us.

DH had for some years been experiencing increased loud agitation and hallucinations that required Klonopin and Ativan (nothing else worked). We tried Seroquel and some others, but had no success with them. I finally I moved DH to his own bedroom (there are two bedrooms upstairs) and that created a place for me that I could read, sleep uninterrupted, and have my own little oasis. It took a long time for me to make that change, I felt like I was kicking him our of his own room, but in truth, he didn’t know where he was, only I did.

So here we are. Ten years post-stroke, and DH does not speak, understand, feed himself, has problems swallowing, is incontinent, has increasing choking problems, and hallucinates. His doctor finally offered a diagnosis: vascular and probably Lewy body dementia.  He suggested enrolling him in hospice which we did around the first of the year, and I am grateful for their help. He is bathed and has nurse visits twice a week. Three time we’ve had to call them late at night for breathing problems, and they come quickly and cheerfully. All diapers, medications, oxygen, a hospital bed, wheel chair, and a multitude of other things are supplied free of charge. This windfall was a surprise as I had no idea what hospice did. Now, of course, I would suggest it to anyone whose loved one had a terminal diagnosis of any kind. 

As all caretaking issues are dealt with by others and I am more than grateful for that. Our home is basically a nursing facility, which again might not be the choice of everyone. He now sleeps almost all the time, and wakes only when his caregivers feed him. Last week his doctor told me that two years ago, he would have given him six months, and he’s still here because of the caregivers. I cry every day and feel devastated that he’s so close to the end, so sad that he’ll be gone.

A few weeks ago BEACHFAN described a conversation she had with her son when she told him his dad was “between here and the great beyond.” I LOVED that expression because that’s exactly where DH is. (BEACHFAN, I’d love to pick your brain about how you’re coping with this!)

I know many on this site have experienced this horrible reality. I’m so encouraged by the way others have handled this heartbreak, but even though I really lost him ten years ago, I can’t picture my life without him. I think I’m probably about two weeks away from the loony bin. Perhaps when the inevitable happens, I’ll be able to pick myself up and go on, but right now, I can’t imagine it. 

I know I’m not alone, but I sure feel that way. I don’t want him to die, but I can’t wish this life for him either. It’s an emotional conundrum that is tearing me apart. 

The attachment is DH with our first Tongan "grandbaby" seven years ago. 

DJnAZ

LilySue wrote:

He was left with total global aphasia meaning he had no expressive or receptive language, a disability most cannot imagine.

Unfortunately, I can imagine it all too well. And I truly admire your dedication, resourcefulness and ability to withstand the emotional stress that accompanies this devastating disease.

I know and completely understand your challenges because my wife has global aphasia along with moderate-advanced dementia. While you have been dealing with your husband's disease for 10 years, our road down hell's highway began about 3 years ago with a diagnosis of Mild Cognitive Impairment. As her dementia increased in severity over time the aphasia component only became obvious less than a year ago. However, it has advanced even more rapidly than the underlying dementia.

Although her ability to communicate is essentially gone, she can speak but usually no more than 2-3 words at a time. For some bizarre reason her three word sentences almost always end with the word "terrible". She will say over and over, "let's go terrible", or "we can terrible". The word terrible is used as a noun, verb and everything in between. But when I saw her yesterday at the MC facility she surprised the staff and me by saying, "I need to pee".  It is difficult to determine just how much she understands when spoken to, but she does respond/follow some directions.

I was her only caregiver at home until May of this year when she went to the hospital for a UTI. During her hospital stay staff physicians had a consultation with me and suggested she needed to be placed in a memory care. They found a facility locally and were able to make arrangements. She was transferred directly from the hospital to the facility. The last time she was at home was May 25th. And she will never be back.

I basically lost my best friend over 3 years ago, lost her again 3 months ago and I know I will be losing her permanently sometime in the not-too-distant future. I'm hopeful that time comes soon. What she is going through is certainly no way to live.

As much as you feel totally alone, be assured there are others who fully understand what you are going through. We're going through it too.

LilySue

It's interesting that your wife uses "terrible" --- I think that would be my word of choice too if I were in that position.

A friend desctibed an acquaintance who also developed aphasia. When he tried to communicate, all he could say were numbers.

"How are you this morning?"

"5-9-4-8"

"Are you hungry?"

"9-6-1-3"

No one understood what he was saying, so frustrating for his family. He likely believed he was making sense. 

At first I think DH was trying to communicate through jibberish, but soon even that stopped. Without language, it's similar to "locked-in syndrome", the absolute worst.

Ed1937

I'm so sorry for anyone dealing with this. "She will say over and over, "let's go terrible", or "we can terrible"." Although much of the time my wife made sense, she often used "three to elevens" to take the place of any word she couldn't find. "Let's go to three to elevens", or "I can't find the three to elevens". That was hard. To be in your shoes, it has to be harder yet.

ImMaggieMae

LilySue, you are an inspiration with the lengths you’ve gone to in keeping your husband at home. It would be interesting to hear how you were able to find live-in care when that became necessary. I am going to do everything in my power to keep my husband here in our home and I’m sure there are others here who could share information as well. You’re right, it is heartbreaking to lose someone we love, bit by bit and not be able to prevent the final outcome. I can’t imagine life without my husband either. 

Thank you so much for sharing your journey. 

Beachfan

Hi LilySue,

I am just now getting around to checking the forum. Your DH and mine and our lives are similar in many ways. We are both retired educators, DH was a high school teacher and coach for 45 years, and remains a beloved figure in our town. DH‘s aphasia came about little by little over the past several years. Now there is virtually no reciprocal communication. He will utter an occasional word, or phrase; most is gibberish and none of it is appropriate.

I have found your caregiving solution fascinating. We had a large home where we could have accommodated live-in help as well, but I chose to downsize, renovate a carriage house on my daughter’s  property, and care for DH as long as I could by myself at home. That ended last November, when the kids and grandkids decided it was time to reclaim their mother and their “Mimi.” Although  I had investigated  placement and respite, it was almost a relief to have someone else, my oldest son, say “it’s time. If you’re looking at respite, you may as well bite the bullet, and consider placement.” 

It is a different life I live now.  I realize that live in help would not be an answer for me in the long run. Although I love DH with all my heart, and miss what we had every day, I cherish the freedom that placement has afforded me. I can enjoy the kids and grandkids, a summer home at the shore, all the while knowing he is well cared for. If I were to get a call to come to his side, that he is unresponsive, I would get there in no time. I would sit with him, hold his hand, and comfort him wherever this journey takes him.  For now though, I am holding down the fort, alone, but not lonely. Every day is joyful to some extent, but there remains a hole in my heart. It’s not how I/we intended to spend our golden years, but it’s the best I can do. You are clearly a loving and caring wife to your DH. I hope you are able to find some peace and enjoyment in spite of your situation. You deserve that and more.  

By the way, your Tongan grandbaby is adorable. Seven of my grandkids live within walking distance; their company makes all the difference in the world. 

LilySue

BeachFan . . .

Thanks for responding -- I could tell our stories were similar. Your situation sounds great. 

Right now I'm suspecting that DH is close to the end. He's only alive because his caregivers wake him for meals, reminding him to swallow, and trying to keep him awake. This is the hardest thing I've ever had to do . . .  to watch him, knowing that he probably would like to be left alone to sleep without being disturbed. 

I realize that it's me who doesn't want to lose him, but he's not really there. I know that, and I'm amazed at my own selfishness. It's such a slow decline, and I'm holding on to him by a thread.

I go out with my kids and have a good time, laughing. Then I come home, and it's so so sad. My adult children are much more pragmatic than I, but it's not their husband of 55 years. I know that everyone in "my world" sees this situation with more clarity. 

His life is virtually in my hands. Feed him or let him sleep? It's really more than I can handle. I haven't been this honest with my kids. They would likely do what your son did, make a decision, and let it be. I'm useless at the moment!

ImMaggieMae

LilySue, I don’t think you are selfish.