Dear Dr. K,
I live with my wife, who has Alzheimer’s.
I don’t argue or try to correct my wife when she misremembers or confabulates but this makes for two different worlds – hers and mine – and so we have less in common and grow apart. Is this the only option or have you better advice? — D.T.
First and foremost, I want to thank you for everything you’ve done, and are doing, for your wife with Alzheimer’s. It’s not an easy journey, and she’s very fortunate to have you involved.
Your question really speaks to the relationship issues that arise in Alzheimer’s caregiving. As the disease changes your wife’s brain, this is going to change the way you and she relate to each other.
I’m glad you are looking for advice on this topic, because maintaining and improving your emotional connection can yield big benefits for both of you, in the short-run and in the long run. In fact, it’s quite possibly the most important thing that you can do for yourself and your wife.
Why maintaining an emotional connection is so important in Alzheimer’s
Feeling more connected will reduce stress for you both. This leads to three very important benefits:
- It will help your wife have the best brain function possible;
- It will help you manage caregiving challenges a little better;
- It will improve your health and well-being.
In my opinion, reducing stress and improving emotional connection can probably do more for her brain health than most dementia medications, and most conventional medical interventions. (Avoiding delirium, however, might be equally valuable.)
The mind-body-heart connection is that important!
Plus, it’s a win-win, since what improves your relationship will help reduce the stress that caregiving can put on your own health.
So, my opinion as a doctor is that this is important enough to your health, and your wife’s health, that you should seriously consider investing time — and possibly money — in this nurturing of your relationship.
How to counter the way Alzheimer’s tends to drive couples apart
Now, like most medical doctors, I’m not an expert in optimizing relationships. So when families approach me with questions like yours, I generally refer them to resources outside the doctor’s office.
Below, I share my current favorite resources. And then I’ll share some tips from two colleagues who have special expertise in helping families coping with Alzheimers.
My top recommendations, based on personal experience with these resources:
- Try watching Teepa Snow’s videos about better connecting with people with dementia. She has a really warm and insightful approach, and several of her short videos are free online. I especially recommend the videos on meaningful activities, challenging behaviors, and music.
- For a book with a variety of helpful tips and insights, try Surviving Alzheimer’s, by Paula Spencer Scott. You can read my review of it here. Added bonus: there’s a chapter with insights from Teepa Snow.
- Have at least a few sessions with a trained therapist or counselor. Getting hands-on support and coaching from a good professional can yield huge benefits for your relationship and your day-to-day life. Remember, this is for YOUR wellbeing and health, along with your wife’s wellbeing.
- Connect with others caring for spouses and relatives with dementia. If you can’t make it to an in-person support group, try an online forum. You can find the Alzheimer’s Association‘s forum for spousal caregivers here.
Recommendations from my colleagues in counseling and social services:
From Linda Fodrini-Johnson MFT, Executive Director and Founder of Eldercare Services:
1) As your wife loses her ability to be your companion I suggest you find activities the two of you can do together – go to the zoo, a garden park, museum – and do these at non-crowded times – mid-week during mid-day. This will give you some times of intimacy and they don’t require a lot of chatting or remembering – they are in the “moment” activities. Watching children can be fun but could be a source of anxiety – base your choices on what gives her a sense of peace.
2) It is very important for you to have relationships with other people who share your interests – if you are in an area that has a “Village” – join it and attend lectures, and other activities that you enjoy. You can sometimes find service clubs like Rotary that get you focused on other activities – this helps keep your mind sharp and actually can be health positive. These are activities you do solo – so you could enroll your wife in a “respite” program and use the time for your personal enrichment.
3) Support groups for caregivers are great places to get ideas from others dealing with the same challenges.
From Mary Hulme LCSW, Moonstone Geriatrics:
I highly recommend the following two books: “Alzheimer’s, a Love Story: One Year in My Husband’s Journey” and “A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s” – both by Ann Davidson. They are powerful, honest and emotional portrayals of living with and loving someone with this disease.
Finally, I would recommend he find a trained therapist to help him cope with the loss, grief and bereavement that so often accompanies spouses caring for someone with dementia.
What have you found helps maintain your relationship in Alzheimer’s?
D.T., I hope these suggestions will be helpful. Please let us know what you find that seems especially helpful, as I’d love to get better at pointing caregivers to useful resources.
For other readers: what have you found that helps you maintain your connection and relationship when a person has Alzheimer’s?
Lisa says
My Mother is affected by dementia, which I am sure will eventually be diagnosed as Alzheimer’s. My step-father is her caregiver and I know he is extremely burned out. We live in separate states due to their choosing many years ago. He has expressed that he thinks maybe she would be better off living near my in the state I live in, without him, near me.
I am frustrated, angry and disappointed. However, I am also overwhelmed with concern that his burn-out is negatively affecting my Mother, and I feel compelled to “do something” to protect her, but I don’t know what!
They have given financial guidance/instructions to his natural daughter, who I don’t get along with. I have no idea what the resources are, and when I asked him if he would be willing to sell the house and move into an assisted living apartment with her he adamantly refuses to consider it.
I feel very much like he is forsaking the “in health and in sickness til death do we part” part of his commitment and vows… however if he is going to treat her poorly or abandon her in a facility without anyone to care for her/tend to her (family-wise) then I don’t want her to stay there!
I am really struggling to figure out how to approach these crucial conversations that need to occur, and how to best financially advocate for my Mother’s care if I do bring her to my state for her long term care.
She is with it enough to know that this is going on, but not really with it enough to make complex decisions and she isn’t out of it enough to “just go along with what ever is decided”.
Do you have any recommendations for resources (legal or financial) that would help?
Nicole Didyk, MD says
This must be such a heartbreaking situation. The answers to many of your questions depend on certain issues. For example, is your mom really capable of making a decision about where to live? If she is, it’s up to her. IF she’s not, then her substitute decision maker, usually her attorney for personal care, would make that decision on her behalf.
If that’s her husband and if you think he’s not acting on her behalf, that may require a lawyer to sort it all out.
Before you get to the lawyer stage, it may be worth gently trying to get involved in their affairs from a supportive point of view. Dr. Kernisan’s new book is full of advice about how to communicate and make progress when helping an older parent.
I hope that helps, and wish you the best of luck.
Leslie says
These comments are all so helpful to me. We have been living with my husband’s dementia for the last few years, and the last year has been very difficult as his memory fails and he needs me to do most of the things he used to take care of (bill paying, taxes, home repair, etc.). He’s frequently sad and I’m often frustrated. I know I don’t handle this well much of the time, and I also realize that I need to develop better strategies in communicating with him, keeping our relationship as close as it can be, and giving him the dignity he deserves.
Nicole Didyk, MD says
Thanks for sharing your experience, Leslie, and I can tell you that you’re not alone. In my practice as a Geriatrician, I frequently hear partners of those living with dementia share such feelings.
Depending on where you live, the Alzheimer’s Association may have a chapter with counselling services or peer groups that could give you some support.
If you’re noticing frequent sad expressions from your husband, it may be worth asking his doctor to screen for a depression.
You might also be interested in this podcast about sexuality and caregiving. , or this interview that I did with Natalie Wilton, a sex therapist and social worker.
It sounds like you’re a very loving and patient partner, going through a difficult transition. Your focus on communication and closeness will serve you well. Thanks for visiting the website and leaving a comment.
Rosa says
My husband has just been diagnosed with Alzheimer’s, I feel like crying cause he looks confused
Nicole Didyk, MD says
Rosa, I’m so sorry to hear about your situation. Your feelings are natural and it’s important to know that you’re not alone. After diagnosis, making a connection with a group of peers can be a tremendous support. In Canada, we have the Alzheimer Society, and in the US, it’s the Alzheimer’s Association.
Wherever you are, reach out for help and to learn more about dementia. I’m glad you decided to come to a site like Better Heath While Aging to get credible information, and please ask questions if there’s something specific you’d like Dr Kernisan and I to cover in the blog.
Susan says
My husband is early 60 and I am finding I am slowly becoming isolated. I find it so very hard on a day to day basis seeing the slow changes that occur and a feeling of loosing your best friend and lover disappear . Some days are spent in sadness others can be frustrating and difficult to stay patient when trying to explain or listen to the same things having to try to explain over and over you feel even your closest friends and relatives don’t really understand what it is like living with it daily. Other days I want to cry when I look at him and feel so sad for what he has lost in his life sonit really feels like swings and roundabouts and is hard to be the person they need 100% of the time. I also feel support groups can help some people cope better but can also make the situation more a reality and tend to compare notes which doesn’t really change your personal situation.knowing-it will not get better only develop further such a cruel and slow illness that only people living on a day to day basis with it can fully appreciate the patience time and love that is required
Leslie Kernisan, MD MPH says
Thank you for sharing your story. And, I’m sorry this is such a hard journey to travel.
I think your points about support groups are quite valid. I would still encourage you to keep trying them though. There’s not really a better way to avoid isolation and that feeling that “others don’t get it.”
One option to consider is an online support group such as the one at AgingCare.com. Unlike an in-person group, where you have to sit there for an hour and listen to people whether it feels helpful or not, in an online group, you can focus on the posts and conversations that resonate with you. The group at Agingcare.com is also very active, so if you post a question or a cry for empathy, you’ll get lots of responses fairly quickly.
Good luck and take care!
Diane Bliss says
My husband is in the last stage of Alzheimer’s and I visit him every day and am so happy I’m able to. People ask if he recognizes me. He may not know my name but he knows I love him. I wish more people could spend with the person. In spite of all the crazyness, the person needs to be hugged and valued.
Leslie Kernisan, MD MPH says
Thank you for sharing your story. This is a very positive and inspiring viewpoint, which I’m sure many will appreciate.
Katie says
AMEN TO THAT!!! God bless you and all of us going thru this unique journey. Be still and present and we will receive gifts from our loved one w AD that will last in our❤️S for eternity. 🙏
John Snow says
“The husband’s efforts to support his wife are commendable. Indulging in frequent outdoor activities and music are some of the many ways that couples use to help each other in case of Alzheimer’s. Maintaining the health and well-being of the couple is essential in enduring their relationship, and this is where a professional home caregiver can assist.”
Leslie Kernisan, MD MPH says
Here’s a comment that was shared with me by email. It’s from Ann Davidson, author of the books recommended by Mary Hulme. Many thanks to Ann for letting me repost her insights here!
“The man’s question is so poignant! Spouses caring for a loved one with dementia face this daily. I hear layers of issues in his question. There’s the practical part: how best to respond when your loved one “misremembers” or “confabulates”. Then there’s the emotional sadness, growing isolation and loss he is also feeling
As to the first part: yes, not arguing or correcting is important. The goal of an exchange becomes reducing anxiety, making an emotional connection and avoiding conflict…. rather than “being right”, trying to explain, or getting the person to be “reasonable or logical”. The tips in the Alz Association “Compassionate Communication with the Memory Impaired” materials are helpful. Learning to do them takes time, mistakes and patience.
Secondly, is the man’s expression of sadness and loss. This needs to be acknowledged too, I feel, whenever we “give advice” on handling problems. Underlying his question is his sadness and the growing distance and separateness he is feeling. Each time we have a garbled, misconnected conversation with a spouse, it drives the wedge of separation in a little deeper. Let’s acknowledge this as well. “
Marilyn Mann says
My mother has dementia and when I visit her we listen to music from her youth. She also enjoys having letters from family members read to her and poetry or fiction that she was very familiar with in the past.
Leslie Kernisan, MD MPH says
Thanks for this comment and for sharing those lovely ideas. Teepa Snow particularly endorses music in her videos, since many people apparently maintain the ability to respond to music and rhythm even when dementia is quite advanced. I like the ideas related to family letters and favorite literature too!
Barbara Kennedy says
My husband has Alzheimer’s. I can’t go get medical care. They said that I can’t leave him unattended. I can’t go-to the store. I have had the police called on me. I am tired. I need help and can’t have it.
Nicole Didyk, MD says
Hi Barbara and I’m so sorry to hear that you’re having difficulty. Caregivers like you are feeling the strain of being confined at home when looking after a person with dementia.
I would advise someone in your situation to find out what supports there are in your community. Many people have a neighbor, friend or family member who can drop in for a n hour or so so that a caregiver can get to an appointment or store. There are some good online resources at Family Caregiver Alliance, or the Alzheimer Association. There are millions of caregivers like you, Barbara and you’re not alone.