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    Angela Lunde

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  • Alzheimer's blog

  • Oct. 1, 2013

    Caregiver finds a way to love and let go at same time

    By Angela Lunde

28 comments posted

Alzheimer's Caregiving

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Transitions and uncertainty become the new normal for the Alzheimer's caregiver. But perhaps no transition is as monumental as when the person you love and have shared a life and home with moves to a care facility. The decision marks an irrefutable passage of a chapter in time.

We met Carol in the last blog post as she spoke about transitions and shared her story as a wife, and in more recent years, a caregiver to her husband, Alan. Here's more:

"Alan was having more incontinence episodes both during the day and night. He was beginning to wander outside. In the shower he often became frightened and then his knees would buckle and he would slowly collapse to the ground ... he was afraid to sit on the toilet. I was beginning to have trouble getting him to sit down in the car.

"When I got the call that there was a room available at the care facility, I cried for hours. I had already declined the opening twice before when the call came. But this time, I knew in my head it was time. Alan's needs were getting too difficult to manage at home, and yet, I was totally unprepared emotionally.

"I had a few weeks to process my decision. I thought he would get better care and felt that he would be safer in the care home I had selected. However, I couldn't suppress my feelings of guilt and sadness. I kept telling my adult kids that I needed a sign that I was making the right decision.

"The evening of the move our kids and I sat with Alan in the living room of his new home. One of the staff members said to Alan, "Let's go get ready for bed." He went with her without turning back to look at any of us. My daughter said, "Mom, that's your sign." It was the best sign I could have gotten!

"Alan's adjustment went smoothly. I soon realized that the home was a better place for him because he could live at his own pace and have more interaction with others. Undeniably, my lifestyle had become too much for Alan.

"As a caregiver, perhaps the hardest transition I've had with Alzheimer's is facing just how long and exhausting the journey is. And when Alan moved to a care facility, my role as a caregiver didn't abruptly end, it just changed.

"It's easy now to become complacent with where Alan is at in the disease because things have slowed down, so changes can catch me off guard. But I find that I do better once I've adjusted to the change — not that Alan gets better.

"Through it all, I could not have survived as well without the friends I've reached out to in my support network, or without our kids. Our kids live out of town and even though I do the caregiving for Alan, my kids do the caregiving for me. They let me know that they don't want to lose both parents from their dad's Alzheimer's."

I often say that when you've met one caregiver, you've met one caregiver — each of you walk the path and experience the journey in your own way. Carol's story is uniquely hers, but I know many of you identify with her in your own situation.

Carol's story is about anticipating what lies ahead, accepting what she can and can't control, advocating tirelessly on behalf of her husband, and continuously adjusting to her next new normal. Moreover, Carol's story is about loving and letting go at the same time.

"Life is not about waiting for the storm to pass. It's about learning to dance in the rain." — Anonymous

28 comments posted

blog index

  • October 7, 2013 8:37 a.m.

    How I empathise with the writer. I went through all that agony and guilt. I recently returned from a 16 day holiday, and found my husband quite at ease, he did miss me, but no longer wants to come home. He knows the Home is where he is at home.

    - Sigrid

  • October 7, 2013 6:29 a.m.

    I recently placed my wife, Clare, in an assisted living facility and wrote about the process that led me to that decision. That article has just been published in care ADvantage, a caregiver magazine issued by the Alzheimer's Foundation of America. Visitors to this site may find it helpful to read this article and other articles about caregiving at my website, www.allansvann.blogspot.com.

    - Allan

  • October 7, 2013 2:10 a.m.

    Thank you that's exactly what I needed to hear. I have five siblings and we are all dealing with my moms Alzheimer in different ways. Just like dealing with someone dying before their dead.I'm so sad and mostly I grieve for the mother's I grew up with.thank you for shining a light on this terrible disease for me.

    - pj

  • October 5, 2013 12:03 p.m.

    To all of the people who have commented-- I can relate to each and every one of you....in every way! I am on the same journey with my husband. He was diagnosed (officially, we knew before that) with Alzheimers, and since 2007 it has become more and more challenging. It is time to place him, and all of the emotions are running high for me. I am 58 and have years to work, and have a caregiver at home during the time I am working. The situation is getting much worse now, and have visited three places for LTC. It is time, and I know it- especially since I have major health issues myself. I have learned from every one of your comments, and I thank you from the bottom of my heart. Letting go is the most difficult thing to do....and I keep thinking if I had children the transition would have been a little easier..... I will pray for each and every one of you--this is a journey that nobody should have to take.

    - Jackie B.

  • October 5, 2013 10:30 a.m.

    Carol's note came as I am trying to decide whether to place my husband in a home. he's become more confused, expects people he fantasizes about to come to dinner and is opening the door and wandering to the lobby more frequently. If he gets angry he slams the door and leaves the building and the aide or I have to follow and bring hime back. Sometimes he doesn't want to eat and last night he became angry when I wanted to watch a news broadcast for an hour. He said he was bored and I said I could watch it in the living room and he said he would watch it. then he decided to go to sleep and innsisted I go to sleep too when I said no, he said he would kill me or break my arm. He grabbed my wrists and a few minues later slapped me. I think it's time to place him in a home in NJ that I've turned down twice because I thought I could handle it. Now I'm tired, I feel my mind is turning to mush and I thin he is capable of hurtin me which I never thought before. Guess I'm waiting for a sign, I feel like I would be deserting him. I do have help four days a week but I have to deal with it the rest of the time.

    - Elise

  • October 5, 2013 9:11 a.m.

    boy I understand Carol's story. I am in the process of the same journey. Questioning everyday how much longer can I this. My husband Brent is total incontinent and very unsteady at times on his feet. I have a couple 4 hr days that someone comes in to help or give me a break. I worry that he will fall and I know that I can not always pick him up. I keep saying one more day just one more day, I will know when it is time. But do I really, thanks Carol for your story gives me something to think about that there could be a better place.

    - Brenda

  • October 4, 2013 4:58 p.m.

    I chose to keep my mother at home with me and it was the hardest decision I ever made. She had Early Onset Alz (dx 10 yrs ago). It was the the most painful, happy, sad, joyful years of my life. You have to take the good with the bad and dwell on the happiest moments. I loved her with ever fiber of my being, even when she was violent. I never lost who she was inside of the shell she became. I was fortunate enough to be able to keep a CNA with her for 8 years while I worked. Alzheimer's is a huge cost monetarily, mentally and physically on all. God bless you all whether you keep your loved one at home on in a care facility. You have to make the best choice for your own situation. No regrets. Love them every minute you have them. My Mother died a few days ago and I still go in her room like clockwork,so used to taking to care of her. She is at peace now. Fly Home Deloris, Fly Home!

    - Dani

  • October 4, 2013 12:46 p.m.

    I have Early On Set Alzheimer's my wife Teresa and myself. What to thank for sharing and caring have a blessed day..

    - Dave

  • October 4, 2013 11:07 a.m.

    It is now three weeks since my husband went into assisted living for mild to intermediate dementia care. He has vascular dementia from a series of strokes and TIAs. I still work so used home care and then adult day are for awhile. But, I spent the rest of the time with him. As he became worse, I knew I had to find another solution for his care as my own health was beginning to deteriorate. My caregiver counselor, and doctors encouraged me to move him to a facility. I purchased Long Term Care for both of us many years ago. So, financially we will be OK. Emotionally is another issue mostly for me. My husband is adjusting beautifully and has a very nice apartment. I take our dog to visit him every week and the other residents enjoy that visit, too. People need to plan for long term care., but that is not human nature. If you have parents who are still healthy look into this for them while they still qualify. Look at coverage for yourself, too. This gives families options and relieves the financial stress of making the decision. There is still the guilt and sadness which I am working through. Our children have been supportive, but they are going through the emotions of this life change too. Take advantage of local caregivers meetings. None of this is easy. I know it took some courage on my husband's part, too. In a more lucid moment a few months ago, he said that he know it has been hard on me taking care of him. Yikes, another moment for tears.

    - Susie

  • October 4, 2013 10:03 a.m.

    I can really identify with Carol. I am a caregiver for my husband. This is the 9th year of the disease[alz]. He is getting worse and harder for me to care for him. I know soon I will consider a home for him. Now, I have decided to have sitters more often to give me a break. I am thankful for my children and friends who support me. I pray I will find the right place and know when it is time.

    - Carol

  • October 3, 2013 8:22 p.m.

    There should be no need to stress about deciding to have your loved one live at a good A/L facility. You want to choose one near your home so you can visit often and be an advocate for their care. Believe me the staff know which families are watching out for their loved ones. Your loved one will probably be happier because their days wil be filled dining with residents in their age group, live music, games and outings to restaurants and parks etc. If memory care is needed they can be moved to that level. We all stressed about it and a year later the folks still really like it. Keep in mind in most cases nothing says if the resdent is not happy you can't take them out. Just be sure tilo give enough time for them to adjust.

    - Susan

  • October 3, 2013 7:45 p.m.

    I placed my mother in a memory care unit in April after visiting 16 facilities in our county in order to find what I thought would be the best fit for her. Caring for her in my home for almost three years was necessary and what I wanted to do but eventually I could see myself wearing down and her needs becoming more and more difficult for me to handle. I had always been told "you'll know when it is time"...and I did, it finally felt like the next step was for me to place her. The adjustment was tough for us both, separating from her was as difficult as her separating from me. But I know I can ask myself three questions and the answers are YES, most of the time - Is she happy?, Is she comfortable?, and Is she safe? Recently new health issues have shown up and more deterioration of the brain is evident by her behaviors. I am thankful I now am part of a team of caring individuals who keep her comfortable, safe and happy.

    - Jan

  • October 3, 2013 7:43 p.m.

    Carol's story is one I can relate to very well. As an only child, I became my mother's caregiver the night my father died. I am also of the sandwich generation and I tried to care for my mother, but when she fell and broke her hip I had to make the decision to place her in a care facility. Although I still feel guilty at times about my decision, I had to realize that I am not equipped to provide the care my mother needs and placing her in the care of professionals was the best thing I could do for her. These days I take comfort in the fact that my mother is well taken care of even though she doesn't know me anymore and letting go was the hardest but most loving thing I could do for her.

    - Tina

  • October 3, 2013 6:44 p.m.

    As one who is waiting for an care facility opening for my wife of 62 years I can see myself going through the same decision process. Reading Marchelle's story I think will make the final decision easier. Thank you.

    - Erwin

  • October 3, 2013 5:28 p.m.

    My husband is still a physically strong man. His memory is the current health situation, which seems to me, to be getting more difficult to handle everyday. I am now in the process of deciding whether to have a granny unit built in our backyard in the event that he needs a place where it will be safer for him as it would be built according to his needs, or to locate a nursing home for him where hopefully, "all his needs would be met". It is not only a question of abounding love to be able to care continuously for the loved one with memory problem, it is also a matter of having the physical, emotional and mental strength for the carer to be able to give care 24/7. I have started making a list of places giving dementia care, visit these places, inquire how the care is given,and determine the costs. It is a very difficult situation for everyone concerned.

    - Paola

  • October 3, 2013 4:01 p.m.

    Thank you marchelle. I need help for her. . I am wore out in many ways. They tell me I cannot get on medicaid until I exhaust most of our savings

    - nick

  • October 3, 2013 3:44 p.m.

    I understand what carol is going thru, my wife joan of 59 years has been suffering with alzheimer's for years and had been at home for the past four years and I was taking her to day care five days a week, and had turned down a opening at a home about three times, then she had a fall at day care and dislocated a shoulder and banged up a knee and I needed 24 -7 help in the house to care for her and get her up so I gave in and placed her in a home and I am sure it is better for both of us she has not asked to leave or go home and her wandering and being up all night on a full moon has stopped. she is being taken care of much better than I was able to care for her and it was $3000.00 per week for 24-7 help. I still have days when I am sure that I could do better and then I stop and think about all the work and I know I made the right decision even though it was one of the most difficult in my life. I try to visit each day for meal time so I can help her she is having trouble eating, swallowing and walking. dave

    - dave

  • October 3, 2013 1:46 p.m.

    I can identify so much with Carol's story. I am at the point of caring for my husband and am stressing over knowing when is the right time for a care facility. My heart breaks thinking am I doing this to make it easier for me or am I passed the time when skilled help should be looking after him. There is no easy answer and I also look for a sign.

    - Patty

  • October 3, 2013 12:22 p.m.

    Nick, you did not say whether you are needing help for yourself or a loved one. If you talk to the social worker at the nursing home you are considering, they can help you figure out how to qualify yourself or your loved one for Medicaid.

    - Marchelle

  • October 3, 2013 12:11 p.m.

    My Mom just lost her battle with Alzheimer's and is now no longer suffering. My family tried to keep her in her own home, then moved her into our home but finally when it was too unsafe for her we had to accept that an Alzheimer's care facility was the only option. The staff there was wonderful but I still feel that as her child, I should have been able to care for her. She's in God's hands and I know she's dancing in the rain now.

    - Denise

  • October 3, 2013 12:10 p.m.

    I am not on medicaid and cannot afford $5500 per month for facility. Where do I turn for help?

    - Nick

  • October 3, 2013 12:10 p.m.

    As 3 adult children taking care of our mom - I know how hard it is to make this transition - we are close - when Carol shared about her husband's fears of the shower,etc it was as if I was reading about my mom- 3 caregivers and we still are having a hard time - Thanks to all who share - it brings tears to my eyes and warmth to my heart.

    - Kathy

  • October 3, 2013 11:53 a.m.

    It is just tooo tooo hard to deal with emotionally. I love my mom with every ounce of my being,every breath I take and every blink of an eye. She has been with me since 2007. It is getting harder, but i find myself pushing harder. I just cannot think of her living somewhere else but with her family. I just cannot do it. Yet, I realize there may come a time when it may just have to be that way. How do I cope with that? She still knows who I am and tells me all the time "I love you and thank you" It feels like betrayal. So, I'm still - by the Grace of God - taking it one day at a time. And even in that, it is still hard to even think about.

    - Lynn

  • October 3, 2013 11:42 a.m.

    Absolutely it is the toughest decision to place your spouse in a care home. I kept my husband at home for over 5 years with the help of my family, friends, and an adult day care. My goal was to do so until he no longer knew us and no longer knew or cared where he was. The decision was made when my children told me it had to be done because I was no longer safe. We found an incredible facility, and he went there on February 28...passed away on April 11th, so I feel like my goal was essentially met. Excruciating? Yes? The best thing to do? Absolutely!

    - Betty

  • October 3, 2013 11:35 a.m.

    I'm on the same journey but unfortunately the stress BEFORE my husband went into a care home has taken its toll on my health and it comes up to bite me every now and then - how does one let go of the stress??

    - Dee - South Africa

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