As we all know holidays are often hectic and frankly are often not even that enjoyable for the caregiver. By the time we take care of our loved one there often isn’t enough time to decorate, bake or entertain as in years past. And, depending on how much you’ve done in the past to get ready for the holidays and how much you enjoyed it, not having time to do it now can be frustrating and depressing.

In the years I was taking care of my husband prior to his moving into the assisted living facility and during the 16 months he spent there before his passing, holidays were literally just another day for me. I felt sad and certainly missed the family dinners, the swim parties, Christmas, and all the birthday celebrations. But when he became ill my priority became that of taking care of him and making his life as normal as I could.

He passed away in April 2019. That means that I have spent three holiday seasons alone. And, of course with the restrictions that came with Covid, even family get togethers were cancelled. But I’ve made it through those seasons each year even though I often depended on visits to the cemetery and lots of tears.

I may have told you this before but if I did, I think it bears repeating as it helped me and may also help you.

On one particularly bad night when I was feeling alone and lonely with no purpose to my life I prayed to God to help me. I woke the next morning with the Serenity Prayer on my mind, I was repeating it over and over to myself. I thought that was strange until I realized that it was the answer to my prayer. God was reminding me that we can change some things but that we need to accept the things we can’t change. WOW! What an awakening! I couldn’t change the fact that my husband had died; I couldn’t change that I was alone; I needed to accept that he wasn’t coming back. I also needed to accept the responsibility for my future happiness.

That doesn’t take away my sense of loss, my missing him or my sadness but it does help me to know that I still can enjoy life and look forward to special occasions and holidays again. I believe I learned an important lesson with the Serenity Prayer… a lesson that I always need to evaluate things in my life, change the things I can and accept those that I can’t change. I also have to keep reminding myself of this prayer.

Nothing can take away the years of worry and sadness that many of us have experienced as we provided care for someone we loved. But when that period is over we need to learn to move forward into a new period of our lives.

With that being said I hope you, like I, can make changes that will enable you to move forward with your life even though some days that seems an impossible task. Believe me …. you can exist and live a good and happy life as you begin to evaluate and make changes or find acceptance.

I welcome your comments and/or questions about my caregiving experiences or how I am coping as I learn to move forward.

Bless you all!

If you’re anything like me, you’re often so wound up in your caretaker role that stopping to be thankful is generally pretty far from your mind. You can just get so darn busy keeping it all together and you are frequently so overwhelmed by the feelings of frustration and loss that you may find it hard to feel anything else.

But then, in the middle of a particularly busy and frustrating day, when you may be feeling hopeless and pretty much helpless, the realization can hit and you will recognize that you actually have many things to be thankful for.

Yes, I said THANKFUL!

Even though my life had changed dramatically with my husband’s Alzheimer’s, I found I could be THANKFUL that he was still there with me. I could see him, talk to him, touch him, kiss him, hug him and help him when he was unable to do things for himself.

And I was THANKFUL for my health and resillence; THANKFUL for the home we had lived in and loved for over 30 years and THANKFUL for the love and laughter we had shared.

So now, here we are almost three years after my discovery that I could still be thankful even in the middle of so much heartache and change.

My husband passed away two and a half years ago and once again my life changed. I am still adjusting to life without him; adjusting to being alone; adjusting to missing him, his bigness, and the zest for life that so defined him. So yes, I still have challenges and I sometimes question why he was afflicted with that terrible disease and why he died.

But today, just a few days away from the celebration of Thanksgiving, I am able to say that I am THANKFUL. I realized that I should not be lamenting about all that I had lost when he died; I should not be focused on my sadness and I should not be regretting the coming years without him. Instead I am THANKFUL for the years we had together!

So if you are reading this I hope you will be able to pull yourself away from your busyness, your frustrations, your anger, your tiredness, your loneliness and the feelings of being abandoned and that you can recognize all the things you have to be Thankful for this holiday season.

Be strong and know that you are loved! Find your Thankfulness

In September 2020 my post was titled, “Getting Through The Holidays without Losing your Mind and your Patience”. We are now approaching the holiday season again and I think some of the information bears repeating.

Here are a few things I hope you will keep in mind during this always stressful season:

The first absolute MUST is that you take care of yourself!

If you are new to the caregiving job you will feel overwhelmed and overworked when holiday planning and shopping mixes in with your daily activities which now include taking care of someone. SO….please consider changing from “the way you’ve always done things” to something more simple. Perhaps you can let someone else host the family Thanksgiving Dinner….you can contribute by bringing your special sweet potato casserole and by just being there.

You’ll no doubt want to include your loved one in family activities but keep their comfort in mind when you make plans that include them. For example, if your loved one is living in a facility you need to consider their comfort level if you take them out; you’ll also want to consider how they will react to being in a group of people who they possibly won’t recognize. Is the noise likely to bother them? How about their need to go to the bathroom? Is there a place where they can rest if they get tired? And, will they need help eating?

Even if you are bringing your loved one into your home for holiday festivities you will need to consider all these things in addition to planning who will take care of them when you are busy in the kitchen, etc?

The second absolute MUST is that you “Accept help from others”

Scale down your celebrations and accept offers of help from family and friends. Hire someone to help with house cleaning. This all comes under the heading of taking care of yourself.

Every one of my five “Caregiver’s Rules” will help you to get through the holidays with less stress and strain. Please review these rules before you start worrying about how to make it through the next couple of months while keeping your sanity and your health.

1. “Always watch my tone of voice, keeping it friendly so that I don’t appear to be bossy, critical, or harsh.”
2. “Accept the challenge/problem that has presented itself and then look for, and find, a workable solution.”
3. “Keep life as simple as possible while adjusting to the changes around me.”
4. “Look for, find, and savor the good moments.”
5. “Live in the Moment!”

Of course the holidays will be difficult! After all, your loved one has changed with the disease they bear and you have changed along with them. One of the most important things you can do is to accept these changes and, following Rule #2, change your thinking and actions to accommodate the generally dynamic alterations in your life.

With that being said, I ‘ll add a new Caregivers Rule which is:

“Make the most of every situation and of every day because tomorrow is not guaranteed.”

Regardless of whether you are a new caregiver of someone who has been doing it for a while you may want to go back and review my September 6, 2020 post titled, “Getting Through The Holidays without losing your mind and your patience.”

Bless you all!

If you’ve been reading my posts on this blog then you know that early on I shared what I called “Caregiver’s Rules”. These rules were crafted by me based on things that were made clear to me in my role as a caregiver.

As weeks and months passed while I was caring for my husband, both at home and later, in the assisted living facility, I learned more about dementia and how it affected a person. I read books and sought information from our doctors and from the internet. Everything I learned was helpful to some degree but most of my learning came from observing his actions day and night and his reactions to things around him that were part of our daily life.

My Caregiver’s Rule #4 states, “Look for, find, and savor the good moments”.

There will be days when you may not find a good moment but don’t give up. Do the best you can with what you are given. Remember that your loved one is living a very different life from what he or she previously had. They are now held captive by the disease they are living with. They most likely feel confused, alone and fearful and they probably are not able to express these feelings to you.

Just keep in mind that you will find there are still a lot of good moments in your life even though some days finding a good moment may seem pretty far-fetched. Don’t give up…..keep searching for these treasures.

Maybe you’ll find one in the middle of a tense situation – it could be a smile or a hug that comes unexpectedly. Maybe its a softness that comes into eyes that appeared to be cold just a moment ago. When this happens, you’ve just found a treasure!

You’ll also find unexpected treasures when your loved one smiles at you and tells you that you are nice; when they eat the lunch you’ve prepared and then your heart swells with joy when they ask for a second helping of food.

There’s a treasure to be found at bedtime when you tuck your loved one in and they look up at you, smiling as they gently touch your cheek.

But don’t let me mislead you….your won’t always find a treasure. Sometimes you will feel rejected when your hand is pushed away or when a hug is not returned. When those hurtful moments occur just remember that the person you love is still there, in that broken body, and that their love for you is intact even though they aren’t able to express it to you with words.

Cry your tears in private or talk about your feelings and hurt with a close friend or a professional. And keep in mind that you must stay strong and healthy and that you need to keep a solid footing as you go through each day. It’s not easy but it is necessary.

So don’t let those treasured moments slip past you…. find and enjoy every one of them!

There will be bad days! Maybe sleepless nights! Maybe feelings of abandonment or isolation! Whatever the cause, you can expect a bad day to come along and you need to handle those times as well as the good or the “not so bad” days.

I know that being a caregiver brings many days when you simply don’t know what to do or how to handle situations that can, and definitely will, arise. And, for those of you who may have now moved out of an active care giver role, you can still expect to have difficult days or nights.

When I had to place my husband in a care facility I realized that removing him from our home didn’t remove my worry or my need to still be a caregiver! Not at all…..now there was the additional worry about his wellbeing since I was not with him all the time and therefore didn’t KNOW what was happening with him. Was he comfortable? Was he hungry? Was he safe? Was he happy? Was he lonely or frightened?

And I worried about whether his physical needs were being taken care of….was he changed when he had an accident? Did someone help him with the toilet? Were his clothes changed regularly? And I wondered…did he get his meds when he was supposed to? There was suddenly another whole new layer of worries for me.

One of the things the facility professionals told me was that now I could be a wife again and not a caregiver. Well that sounded nice but I knew in my heart that I would always be both a wife and a caregiver; I would always function in one role or the other as the situation warranted. I realized that now I was also his advocate and would function in that role consistently.

It was my duty to ensure that he was treated with care and respect; that he was kept clean and well fed; that his health was monitored and that he was encouraged to participate in social activities that might possible stimulate his brain and push away the terrors associated with Alzheimer’s disease or with any form of dementia.

So, back to coping with bad days……No one solution will work for everyone. You’ll need to find what works best for you. But I will share some of my techniques.

When I can’t sleep I frequently play Gin or Euchre on my I-pad for however long it takes me to feel sleepy. I also play word games and do jigsaw puzzles. I don’t read because that stimulates my mind and puts images in my head that can create even more reasons to stay awake.

If I am haunted by sad memories and my feelings are raw, I sometimes write those feelings down in my journal. It helps just to verbalize and get those thoughts and feelings out; just writing it down often soothes my soul.

I have found that writing a letter to my husband helps me to cope with what is often an overwhelming feeling of sadness. I can pour out my feelings and my heart’s wishes and I can share my grief with him in that letter.

I’d like to share with you the first letter I wrote to him:

Tuesday, October 8, 2019

Dear Al: You’ve been gone for about 5 and 1/2 months and I miss you even more. I just never considered that I’d live along again! I guess I just thought we’d both live to be really old and then, when one of us died, the other would be OK on their own for whatever time they had left. Really I guess I thought we’d be so old then that it wouldn’t matter. Crazy, huh?

I go to the cemetery at least 2 times a week – I sit on the bench, often lay my head on your monument and I talk to you. I sometimes cry. It seems to comfort me, just being there.

Some days I hear a song that I remember dancing to and I just close my eyes and sway with the music. I wish for those moments again. Sometimes I remember how your body felt so close to mine and I can almost feel your breath on my face or my ear. I feel your warm hand holding mine and also remember how you’d squeeze my hand when the music stopped and how your hand felt on my back as we walked back to our table. We felt so much love flow between us.

There are so many memories that I treasure but there are also regrets for the time I may not have spent with you because I went to Stock Club, Book Club, etc. I wish I could have those hours back!

I loved you the first time I saw you and I loved your even more the last time I saw your face. You were the love of my life. I know you loved me too. We were so good together whether working, playing of just sitting quietly. I miss your wit, your big laugh, your smile, your silliness and your conversations.

Love always, Jenny

Remember how you felt when you met that one special person, the one you just knew was “the one”? Remember the thrill of falling in love? And, remember how you dreamed of having that person in your life always? Remember how dreams of building a home and a family together filled your head day and night?

I remember those days vividly….

We were not youngsters when we met and neither of us was the type of person whose head was filled with dreams that were outrageous or unattainable. Both of us had been married previously and knew what we wanted, and needed, in our lives.

We both wanted a partner….someone to share our deepest thoughts and dreams with; someone who would understand our desires and someone who would be there for us in every situation. And on top of that, we each desired to be loved, cared for, and treasured. We both had dreams of what we wanted a relationship to be.

After four years of dating, we began planning a wedding. We talked a lot and expressed our wishes for what we wanted our future to look like. Our wishes were simple and we felt that together we could build the life we each wanted.

But there were bumps along the way. After all, we were two different individuals from different backgrounds and we both had ideas about how we thought things should be. We compromised. When we bought a house and moved our furniture into it there were two of everything so some things had to go. His furniture was nicer and of better quality than mine so…..you guessed it, mine went. I didn’t expect to feel bad about that but somehow I felt that I was diminished and not valuable to the process of creating our home.

Being sensitive to my feelings he suggested that we buy some new things that we would select together. That took away the feelings I was experiencing and replaced them with happiness. So now, instead of having his and mine, we had ours.

Now when I think back to those years of building our love and our life together I wish that I could have had more time with him. We would have celebrated our 40th anniversary this year. As it was, we had 38 years together before his death. Those were good years! We never stopped dreaming, we created a wonderful life together and when he became ill, I still dreamed of his returning to good health and to spending more time together.

But in my heart I knew that our time together was limited by the Alzheimer’s that robbed him of his world and eventually, his life. The night before he went into the assisted living facility, we laid in our bed, holding hands, as he talked about his wish to spend another winter in Florida. He said, “I think I could drive it; you can help me.”

Knowing that there was no possible way that we would ever travel again, I let the tears slide silently down my face as I talked with him to plan the trip I knew we would never take. That was one of the hardest things I had ever had to do. Oh, how I wished that we could turn back the clock!

But for that one night, he still had his dream and his wish for our future. He didn’t know that things would never be the same for either of us again.

Our wishes and dreams of many years are now treasured memories. Thank God for giving us the years together to build these wonderful memories.

• 

I have previously written about the changes that occurred in our lives with my husband’s illness and how that illness either directly or indirectly caused changes that affected us both.

I’m sure that most everyone will deal with both personal and lifestyle changes during a particular time of their lives or even all through it. When changes occur we have to make a decision as to whether we will accept the change and adapt to it or if we will reject the change and everything involved with it. Sometimes we have no choice in the matter. It is what it is!

After adapting to the many changes I faced during my husband’s illness and in the two years following his death, I realize now just how much those changes have affected me. I can see how I’ve changed and grown from that old me into the person I am today.

The person I am today is different….. not better than before or worse than before….. just different.

I am a little quieter; a little more apt to feel down/blue; sometimes choose to be alone instead of with others; I often feel sad; I am more apt to be late; and sometimes things just don’t seem quite as important to me as they once were.

Sometimes I feel cheated!

• cheated that my husband was afflicted with the horrible disease that eventually took his life.
• cheated that I don’t have him here to tell me about his luncheon with friends;
• cheated that I can’t tell him about a book that I’m reading.
• cheated that I don’t have him to kiss goodnight and snuggle with on a cold night.
• Cheated that I will have to grow old alone.

But on the other hand, I am thankful for so many things…..

• Thankful for the 40 years of love and happiness that we had.
• Thankful for our families.
• Thankful for my many friends.
• Thankful for my curious mind that keeps me busy and gives me purpose.
• Thankful for my relationship with GOD.

But let me get back to changes that occurred in our lives over the past few years:

1. The illness that changed our lives so completely and gave me no choice but to learn and grow so that I could provide care to my husband.
2. The deterioration of our social activities.
3. Weighing all the options and making the hard decision when it came time to place him in an assisted living facility.
4. Being alone in our house which no longer felt like home without him there.
5. Knowing the time was coming when I would need to prepare to sell our house.
6. Taking care of legal and financial matters without the benefit of his input.
7. Losing the comfort and security of the life we previously enjoyed.
8. Being alone and having feelings of being inadequate for the challenges I faced.

Al declined as the disease worsened. He was in pain a lot of the time but we could never determine what caused the pain. But he was happy! He never once asked to come home; he never begged me not to leave when it was time for me to come home; he liked the people who cared for him there and was respectful of them. He enjoyed the activities and especially the musical programs.

Most of all though, he was so happy to see me every day when I arrived. He would give me his sweet smile and most days, would give me a hug. We laughed and talked and ate the treats I took him every day. We walked, inside and outside, I pointed out flowers, vegetables in the raised gardens, and other things of interest in the yard. We sat on one of the benches and watched the birds and the people. He was content!

So when I tell you about the changes that occurred in our life and about how those changes affected both of us, I must also tell you that we shared many happy moments during those stressful times.

One thing that never changed was the love between Al and me. That never waivered. His sweet smile and warm hugs continued up until the last few days of his life when he was just too weak to hug me.

I kissed him goodbye when I left him the evening that was his last on this earth. I whispered goodbye, I touched his face and told him that I loved him. I think he knew that even death, the ultimate change, was not enough to destroy what we had together.

How many times in our lives do we feel like our heart is breaking?

You may have felt like your heart was breaking when your teen aged boyfriend broke up with you, or maybe when your parents wouldn’t let you go to that party that everyone else was attending. In addition, you can probably think of other times when you felt heartbroken but, in general, that feeling soon passed and whatever caused the feeling was forgotten. There was no lasting effect from that feeling and life continued on.

Exactly what is a “Broken Heart”?

The definition is “a state of extreme grief or sorrow, typically caused by the death of a loved one or the ending of a romantic relationship”.

It is actually a condition with symptoms that may feel like a heart attack, like chest pain and shortness of breath but it’s actually caused by going through an emotionally stressful event and not by clogged arteries.

What to do when your heart is broken?

Although it’s a terrible feeling that seems like it will never go away and once it sets in, it can crush you like a boulder. But have faith that if will get better with time. Be good to yourself, make new friends, get a new cool haircut, or buy some new clothes. Do something that makes you feel happy even if it’s only for a short time. And something I’ve found helpful is talking about my feelings.

I loved my husband for over 40 years and, even though he’s been gone for two years, I still love him and I miss him with every fiber of my being. But that hasn’t kept me from moving forward. I have many friends, go to my knitting group, my writing group and my art class. I play cards once a month and I am generally busy with my crafts and my many interests.

My heart was broken when he was diagnosed with Alzheimer’s. It cracked even more when I realized that I could no longer keep him at home and then it just opened wide the day I had to place him in a care facility. The pain and anxiety of my battered heart never went away, it just dulled after a while.

But then, on the day that he took his last breath and I realized that he was gone….that I would never again get to hear his big laugh and look at the face that I had loved so long and so well, my heart shattered and I was totally lost in the sadness and pain.

So, does a broken heart ever heal…..I don’t think it heals completely. I can hear a song that he liked, or see something that he would have enjoyed, and I am overwhelmed with a renewed feeling of grief.

Have I moved forward? Yes, I think he would have wanted me to do that. Does my heart ache? Yes and I think it will always ache even though I am moving forward without him.

Even though it was two years ago that Al passed from this world into his heavenly home, I feel him close to me every day. I have a picture of the two of us on my night stand and I often say good night to him as I turn out the light and stretch out in bed, moving my foot over to touch him…….and then I realize that he’s not physically there with me.

So many things bring him close to me, a song that he liked, a song that we danced to, a food that he enjoyed, a drive in the country on Sunday. He enjoyed being with friends and was always there for anyone who needed help. He gave the handyman an extra $20 for a job, encouraged a struggling niece or nephew when they were in school or in a shaky relationship. He gave me so much support, telling me how smart I was, how I could do anything and everything, how pretty I looked, etc. As I’ve said before, he gave me encouragement, courage, strength and so many other things. And on top of all that, he loved me totally and welcomed my love and attention. I owe a lot to him.

I still feel like a caregiver! I treasure the time I spent with him during his illness and even though there were many days and nights when I felt alone, all used up and frustrated, I smile when I think of the moments when we would lie in bed and he would hold me and talk about plans for the future. I smile when I think about dancing in our kitchen and when I remember how he would sing along to the song, “I Love You” while holding my face between his hands. He loved the movie, “The Sand Pebbles” and never tired of hearing the theme song from that movie which was “And We Were Lovers”. After his illness, he would sometimes ask me to play the Matt Monro CD with that song on it when friends stopped by.

I miss being able to care for him. I often find myself looking up from something and expect to see his face in front of me. I pray that I did everything I could to make his life good and that I did everything I could to take care of him as he declined.

Now I find myself paying more attention to birthdays, anniversaries, deaths, and other events and I care about the feelings and health of the person celebrating or mourning the event. I feel like a caregiver…..I do care about others, about their successes and failures, about their families, about their mental health when dealing with stresses in their lives. I will offer my shoulder to cry on, my ears to listen, my time to console and I will be a friend.

I had a wonderful 38 years with someone that I loved and together we made a beautiful and full life, had a loving home and a colorful and fragrant flower garden. I learned so much from Al! I am a better person because of him.

I pray that God will lead me to make a positive difference in the lives of those around me and yes, that I will continue to be a caretaker when it comes to matters of the heart.

My posts from this time forward will tell you of my finding my way alone, without my husband. I don’t know what may be in store for me but I will embrace it fully and will lean on the strength and courage I gained during the time I was caring for Al.

My husband of almost 38 years was gone! What would I do without him? Despite my sadness at losing him, I also felt sad for myself……

That night, the night he passed away, I stroked his face and kissed him for the last time. I felt the loss of his presence so intensely. He was such a big personality! He had a loud voice, a big laugh and a smile that made everything alright. Even in his illness he had been my rock.

The funeral director came to get him. As he wheeled him out of the assisted living residence for the last time, the staff on duty that night lined the hallway to say goodbye, many with tears in their eyes and others who reached out to me with a pat on the shoulder or a hug. Their devotion to him was evident and I knew they would also grieve his loss.

Fortunately the weather was beautiful the day of the funeral. He was buried in the family plot and, despite a little mix up with where to dig the grave, everything went well.

Let me tell you about the little mix up that I referred to above. The family plot has 12 grave sites in it. There is a monument with his grandmother and grandfather on one side and his parents on the other. There is another monument separated from the first by a bench, that has Al and me on one side and his sister and her husband on the other. He and I are on the side with his grandparents. There are two grave sites between them and us.

The day of the funeral I noticed that the covered pile of dirt was not where it should have been when they dug his grave. At the end of the service, when everyone had walked away, I mentioned to the funeral director that apparently they had dug in the wrong place, putting him in one of the two spaces between his grandparents and us and not in the space below his name on our monument which sat close by. The director agreed.

My sister-in-law and I talked to people from the cemetery and they insisted that the grave dug was where he was supposed to be but they finally saw how ridiculous that was since his name was on the monument and reason dictated that he should be buried there under his name. They said they would move him to the chapel and would dig in the proper place then bring him back to bury him correctly before the end of the day.

The funeral director left and with assurance that the mistake would be taken care of quickly, we left. Walking away, looking back at that hillside with his coffin sitting there in the sunlight and nothing around but the slight breeze that was blowing, made me feel like I was abandoning him, leaving him there, exposed and alone.

Thankfully they got it all fixed that afternoon and he was finally where he was supposed to be. Later someone said to me that Al would probably have gotten a kick out of the whole thing and I replied that, knowing him, I wasn’t so sure of that. He probably would have just shaken his head and said, “What kind of dumb cluck can’t even dig a hole in the right place?”

The day I had long dreaded had finally come. How would I be able to bear not having him around? Could I function without his council, his support and his love?

What now?