How I supported my husband as he struggled with Alzheimer’s

When my husband Terry* was diagnosed with Alzheimer’s at age 69, our world changed forever. Keeping my vows “in sickness

When my husband Terry* was diagnosed with Alzheimer’s at age 69, our world changed forever. Keeping my vows “in sickness and health” was not easy, but we coped with his condition together.

Terry had always been our “life of the party”. He could make friends with anyone, had all the best jokes and everybody relied on him for his strength and joy.

Our son Luke* inherited many qualities from Terry. Just like his father, Luke had a natural sporting ability, a big personality and a sense of adventure. Luke became an Army officer, and quickly rose throughout the ranks.

Before Terry was diagnosed, he and I were enjoying retirement together. We had a small unit near the beach, and regularly went fishing, walking and swimming. Our lives were bright and happy.

Looking back, I realise these were the “golden days”. Our son had grown up and established himself, our mortgage was finally paid of and we were free to enjoy life together.

Everything changed in 2012 though. I slowly noticed that Terry had become more vague and forgetful. He couldn’t remember important dates, or why he went to the store.

At first, we joked that retirement was sending Terry “batty”. Soon the jokes stopped though. When our son Luke came to visit, and Terry couldn’t remember his army battalion, I knew something was very wrong.

Together, Terry and I went to visit our local GP. We’d known Dr Smith* for at least a decade, and he could see the change in Terry too. My sunny, playful husband had become hesitant and withdrawn.

Terry had extensive tests. The doctors examined his blood, checked his liver and thyroid function, did cognitive assessments, looked at Terry’s concentration, problem-solving and counting.

My heart broke as I watched my husband struggle to remember the patterns in a deck of cards. I knew my answer before the doctors even had to speak.

“I’m so sorry, your husband has Alzheimer’s disease”, Dr Smith told me. My stomach sank, knowing everything in life was going to change.

As the months went on, caring for Terry became more and more challenging. He was still a strong man, so coaxing him into the shower or begging him to eat dinner became an ongoing struggle.

Terry eventually forgot where he was, even if we’d take a stroll to a familiar beach or fishing spot. He couldn’t perceive the space around him, so I had to take on all our driving for safety’s sake.

My husband lost the ability to write, so I had to pay our bills (something Terry had always cared for). Terry made increasingly bad decisions, so I’d find him in pyjamas by 3.00pm or eating food straight from the freezer.

I wouldn’t wish Alzheimer’s on anyone. It reduces your loved ones to “glimpses” of the lively people they once were.  It’s a gut-wrenching condition not only to have, but to witness.

Of course, I felt devastated and frustrated too. My husband had always been so “switched on”, that his decline felt vastly unfair. I routinely asked myself, “why Terry?” I was angry and broken, but my feelings had to come second to the needs of my husband.

Luke asked for a transfer with the army, and visited us often as he could. My son was worried about the impact that caring for Terry was having on me – both physically and emotionally.

“You can’t lift Dad into the bath”, Luke said. “You’re going to damage your own health”. I was adamant though. There was no way my husband was going to a nursing home.

After all, I’d made vows. “In sickness and in health, for better or worse, till death do us part”. Watching my incredible husband wither both mentally and physically was breaking my heart, but I would keep my promises.

When Terry forgot Luke’s birthday, I openly wept in front of him. In his mental state, Terry couldn’t understand why I was crying, but he gently wiped away my tears anyway.

“I love you Angie*”, Terry told me. He looked deep into my eyes, and I could see the old spark of my husband from days gone by. “Don’t cry please sweetie”, he said.

Terry and I stayed in that moment for a long time. I wept, he wiped away my tears and held me close, even though I don’t know how much he understood.

In that moment, I knew no matter how hard everything was now, I was grateful for the lifetime Terry and I had shared together. He was the most amazing partner and father I ever could have asked for!

When Terry passed away two years ago, it was “time”. His spirit needed to be free, from the body which no longer served him. I am still devastated by Terry’s loss, but I know that one day we will be reunited in Heaven.

My husband will not be defined by the last few years of his life, but by the joy, warmth and abundance he brought to everyone around him in his “golden days”. Goodbye, Terry my love.

Can you relate to Angie’s heartbreaking personal story? Is somebody you know living with Alzheimer’s?

*Names changed to protect privacy

    • Christine Karanges  

      I myself have Frontal Temporal Dementia I was diagnosed in late fifties I am now 63 It’s a battling disease I live alone and the challenges are great I have wonderfull children but they are still young and have there own lives I go to a support group and have a good medical team I don’t remember most of my past and slowly the present Its not the way I would have wanted to happen as I am not going to see some of my children get married or see my grandchildren I am just taking one day at a time yours truly Christine

  1. Although my husband does not have alzheimers. .he does have Parkinsons. It us devastating to watch this nan loose his independence by loosing his mobility. It frustrates him…it makes him angry. After 30 years a fireman. .he should be enjoying his retirement but is extremely limited by what he can do.

    • We lost Mum to Parkinson’s 10 years ago, and I still remember the heartbreak of watching her lose her independence. It is incredibly hard, especially when they have been so active, vibrant, and involved in life.

    • It is hard. ..he seems to loosing it faster now. after 2 bad falls he us now in a wheelchair which makes him.upset.

    • Hi. Hi Lynda, my heart goes out to you. My husband also had Parkinsons, and to see the strong, wonderful man you loved, become like a child that needs nurturing , breaks your heart. Even their facial structure changes, so they oook different as they struggle with this cruel disease. But inside in their heart is still the wonderful man you married. Somehow we are given the strength to manage , not only the physical side of caring, but the emotional pain as well. Now 5 years later, the happy memories are overtakng the years of pain and upset.
      Life can be cruel, but also so beautiful.

    • My husband has Parkinson’s and I hope and pray for a cure and I worry he may get Louie front dementia which goes hand in hand with Parkinson’s 🎀

  2. How lucky you are to have experienced a deep and meaningful marriage. As devastating as it was to see your beautiful husband struggle with a cruel disease love kept you going.

  3. This is true love,and a very beautiful and moving story. Thank you for sharing. It is the cruellest of diseases,and losing the someone you know, slowly, in degrees,is unbearable, but his response with a beautiful embrace when you were crying,shows he was present on some level. May you have the joy and peace of that memory.

  4. Wow what a powerful story – sadly it’s happening too often in families. Such a beautiful love story to the end –

  5. God bless. I had been through similar for about 14 years. No, we cannot say the same because each patient with this condition is different. My husband passed away November 2014. It is tough 24/7 but when you love someone and have been together 50 years life continues on. I still live in our home, am active playing golf and lawn bowls. Do a lot of charity sewing with a few friends, and have a wonderful family of a daughter and two sons with their families. There are many friends who have lost their forever partners and are a great support group. No it does not get easier, tears often flow but life has to go on. Hugs to everyone who find themselves in similar situations. The key is to have lots of patience, lots of love and lots of support. 😍

  6. My husband was diagnosed at 59 with Lewy body dementia, in hindsight signs were there earlier, about a year on he started showing signs of Parkinson’s. So now he has both, it has been 5 years now. We have been married just on 42 years. This is not the way we expected to spend our retirement, but we just deal with it the best way we can and enjoy our time together.

  7. My husband has dementia, I struggled for several years to look after him at home and eventually listened to his Dr to put him in an Aged Care home, I couldn’t lift him when he had regular falls, he adamantly refused to shower, I would have to scrub his bathroom up to 3 or 4 times a day as his toilet habits changed rapidly, he was continually getting food from the fridge or freezer as he didn’t remember eating. He has been in the home for 8 months and this week he has gone into higher care at the home, and seeing him yesterday he looked and was much happier where he is now.

    • Vivienne. It is a hard decision to make. My father has frontal lobe dementia and is steadily declining. My mum cared for him at home but it became increasingly difficult for her. Dad got very anxious about what he would be doing each day and the day after. Each evening he would constantly ask mum what they would be doing the following day. He began to get very anxious about keeping time and how they would get to places, despite the fact that I usually took them. We made the decision to place him on a care facility. Although he doesn’t understand why he is there he enjoys not having to worry about time keeping or appointments and he is much more relaxed. We used to take him out for lunch regularly but even that made him anxious. On his doctor’s advice we stopped taking him. It is sad to see his world shrinking but he seems contented and even happy now.

    • Nita my husband also has frontal lobe dementia, all caused from a fall, we are not able to take him out any more because of his toilet troubles etc, it’s heartbreaking, but I know I’ve done the right thing for him putting him in the home as they have all the staff who can shower him shave him assist his toileting etc but I must admit I still get the guilts.

  8. Yes I can. My sister-in-law cared for my brother who took to his bed for about twelve years before he died.He didn’t have alzeimers exactly, it was diagnosed at one point however.
    So sad seeing him slowly wasting away. She was wonderful. Still is and always so fragile herself.

  9. True love, when you and your partner has true love it’s easy decision to take care of them, my husband died 10 years ago from cancer, I had to step up early as he had no strength to do much, so I found my self driving every where, and when you live in the country you had to travel for days, but you married for better or worse in sickness and health and now I have been told I have early onset dementia and I am not looking forward to the future

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