Caring for Dementia

We wanted to use this opportunity to address a situation we see far too often. Instead of placing blame, we want to create a space for open dialogue and communication between family members.

Below you will see two generic letters. One letter from the caregiver to a family member, and one letter from the family member to the caregiver. Our letters aim to recognize the challenges and struggles of each “side” to hopefully create understanding and empathy. These letters are written in the perspective of a sister caring for her Mom, reaching out to her brother.

Please note that each point will not relate to every individual situation. If you are sharing this with a family member to create a discussion, be sure to let them know which points to exclude while reading. Or copy & paste pieces of the letter that you feel resonates with you.

For example “This letter perfectly describes the way I’m feeling, please exclude #4 and #7, as those don’t pertain to our situation”.

Letter from the Caregiver to the family:

Dear [Family Member],

I hope this letter finds you well. I wanted to take some time to express my thoughts and feelings about Mom’s situation and why I feel it’s crucial for us to come together to support her.

Firstly, I want to acknowledge that I understand we both have busy lives and commitments, but I urge you to consider the immense responsibility that falls on my shoulders as Mom’s primary caregiver. Taking care of Mom is not just a responsibility; it’s been a sacrifice of my life and identity.

Here are some reasons why I could use your help and support:

Emotional Strain: Watching Mom’s decline due to her dementia is emotionally taxing. It’s heartbreaking to witness her struggle with daily tasks and gradually lose her independence. Having your emotional support would provide me with much-needed strength and comfort during these difficult times. Giving me a call once a week to allow me to vent would help in ways you couldn’t imagine. I understand it’s possible for me to call you, but please understand it’s not very forthcoming to initiate a call to speak about my problems. Can you please call more often? I really need a friend.

Physical Demands: Caring for Mom is physically exhausting. From helping her with personal hygiene, assisting her with mobility, preparing meals, and always having a constant eye on her. I am tired, my body is tired. The physical demands of caregiving is taking a toll on my health and well-being. If this gets to be too much and I get hurt, she would have to go into your care, or into a facility, for safety reasons. Having you around to share some of the workload would alleviate some of the physical strain, allowing me to rest my body and mind.

Financial Burden: The cost of Mom’s care, including medications, doctor’s visits, food, incontinence products, adaptive tools and in-home assistance, adds up quickly. As much as I try to manage our finances, the financial burden of caregiving is significant. If you were able to provide a bit of financial assistance, it would ease stress on me trying to keep us afloat. All we want is the best possible care for Mom, and it’s difficult for me to provide that when the financial stress is so overwhelming.

Experience and Expertise: I truly understand the rationale behind having those with expertise and training in dementia take on the responsibility. Yet, I humbly ask you to step into my shoes for a moment, to grasp what it means to be in constant proximity to someone living with dementia. The weight of this responsibility takes a toll on my mental and emotional health. It’s not just about physical care; it’s about the emotional strain of witnessing the decline every day. I’m reaching out to you from a place of vulnerability, simply longing for understanding and perhaps a moment of respite to recharge and tend to myself.

Quality Time with Mom: Mom treasures the time she spends with both of us, I know she doesn’t remember, but your visits have a lasting impact on the way she feels and her emotional state. I’d like to spend quality time with Mom too, but it’s becoming increasingly challenging for me to juggle caregiving responsibilities, and spend that time with her. Having you around would not only provide Mom with companionship but also give us the opportunity to create memories together as a family, memories for you and I. I know it may seem difficult to spend “quality time”, and it might feel awkward at times when you don’t know what to say, but she can still be fun, and I’d like to show you some ways we enjoy our time together.

Shared Responsibility: Caring for Mom is a responsibility that should be shared among family members. I know that my personal situation allowed for the caregiving role I took on, but I did not expect this to be my “new life”. As I care for Mom, I’m slowly starting to lose my identity. I don’t do the things I enjoy anymore, my new identity is “Caregiver for Mom”, and I’m struggling to live with that reality. I really don’t want to bear this alone, and I believe that together, we can provide Mom with the love, care, and support she deserves. Could you maybe provide some ways that you can reasonably help or assist?

Safety Concerns: Mom’s condition requires constant supervision to ensure her safety and well-being. It’s difficult to have eyes on someone 24 hours a day, 7 days a week. I even have to sleep with one eye open just in case she wakes in the middle of the night. I still have to do errands and chores around the house, this now has the potential for dangerous situations and hazards because I can’t keep a constant eye on her. It would help me immensely, if you were able to sit with her while I do some chores around the house, or complete some errands.

Given No Choice: I feel resentful because I believe this was a situation that was forced onto me because of our living and personal situations. I did not intend to be a full-time caregiver, but the lack of inaction forced me to take on a primary caregiver role. I am not placing blame on anybody when I say this, the facts are that she required help, and no one had offered that to her, so I had to. This situation isn’t ideal for me or my well-being at this time, it’s important that we get together to discuss other options for Mom’s care, or ways that we can lift some of the responsibilities off me.

Advocacy and Decision-Making: As Mom’s condition progresses, there may come a time when important decisions need to be made regarding her care and treatment. I feel so much pressure making these decisions on my own sometimes, and I need someone I can lean on to help me make the right choices. It’s important to me that we do what is best for Mom, and I may not always know the answer to that. Having both of us involved in these discussions ensures that Mom’s wishes are respected, and the best interests are always kept in mind.

Family Unity: Our efforts in caring for Mom strengthen the bond between us as a family, and we would do anything for family. Whatever squabbles and arguments we’ve had in the past should be left in the past, I need my family more than ever right now. Despite the challenges we will face, we will do it together and come out strong on the other end. Our love and dedication to Mom unite us in a common goal of providing her with the best possible care and support.

I understand that you may have your own reasons for not being able to be around as much as I’d like, but I urge you to reconsider and tackle this challenge alongside me. Your presence and support would mean the world to both myself and Mom.

Let’s come together as a family to ensure that Mom receives the care and attention she needs and deserves.

With love and hope,

[Caregiver]

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Letter from Family Member to the Caregiver:

Dear [Caregiver],

I hope this letter finds you well. I want to start by expressing my gratitude for all the hard work and dedication you’ve put into caring for Mom. I know it’s not an easy task, and I admire your strength and resilience in the face of such challenges.

I want to take this opportunity to explain why I find it hard to come around and provide the support you need:

Work and Personal Commitments: As much as I wish I could be there for Mom more often, my work and personal commitments often leave me with very little free time. Balancing work, family, and other obligations is a constant struggle, and I often find myself stretched thin trying to keep up with everything. I would have to sacrifice a work or personal commitment to be able to visit you and Mom. I’m thinking I probably should, but then I wonder “will I get fired”, “will I miss crucial developments in my children” or “will this cause issues with my spouse?”. It’s difficult for me to prioritize the most important things in my life, when they’re all such heavy commitments. Can we work together to find something that would work for my schedule and yours?

Geographical Distance: Living far away from you and Mom makes it difficult for me to be physically present to help out on a regular basis. While I wish I could be closer, relocating is not feasible due to my job and other factors that tie me to my current location. With the very little time I have already, adding in a couple hour drive would leave me scrambling to get other priorities met. Is there anything I can do remotely or virtually that could assist you or Mom?

Emotional Toll: Seeing Mom’s condition deteriorate is incredibly difficult for me, and I often find myself overwhelmed by feelings of sadness and helplessness. It’s hard for me to confront the reality of Mom’s illness, and sometimes, it’s easier for me to distance myself emotionally as a coping mechanism. I find myself not knowing what to say, or how to act around her because she isn’t the same person as she once was. How do you have a conversation? How do you offer support or comfort? I would need help easing into this, and maybe you could provide some pointers of ways I can communicate with her.

Financial Constraints: While I deeply wish I could offer more financial assistance to support Mom’s care expenses, I must also fulfill my own financial obligations. Balancing these responsibilities is a constant source of stress, and I carry a heavy burden of guilt for not being able to contribute as much as I’d like. However, if you can let me know where you require financial assistance, I’ll do my best to help and support you where needed.

Fear of Inadequacy: I’ll admit that sometimes I feel inadequate when it comes to looking after Mom. I don’t feel that I have the abilities to meet her needs. I worry that I won’t be able to meet the standards or provide the level of care she deserves. These feelings of inadequacy can be paralyzing and make it hard for me to step up and offer help. I don’t mention it enough, but the way you take care of Mom is superb, your resilience in the face of these challenges doesn’t go unnoticed, but it should be mentioned more. Thank you for everything you do.

Family Dynamics: Our family dynamics have always been complicated, and Mom’s illness has only intensified tensions and conflicts. I find it difficult to be there in support of someone who I felt dismissed me my entire life. It’s easier for me to block out these memories, then have to navigate them with someone who now has a cognitive impairment. This makes it difficult because the answers I desperately needed, I’ll never receive. It’s challenging to come to terms with, and makes it hard to be around Mom sometimes. In order to move forward I realize this will take some internal processing, please be forgiving if I require some time to do this.

Guilt and Shame: Despite my best intentions, I can’t help but feel guilty for not being able to do more for Mom. I find it hard coming up with the right things to say, or the right questions to ask. After a long day, it’s challenging to muster up the energy to call or to visit, which then heightens feelings of guilt. I’m already stretched so thin that it’s hard for me to imagine taking on anything more than what I currently do. Mom’s condition does not make it easy to interact with her, maybe I avoid it because the conversations make me feel uncomfortable and awkward. This makes me feel even more guilty because that’s Mom! I’ve never felt I wanted to avoid her, but I’m ashamed to admit it’s how I feel now.

Personal Health Issues: I have my own health issues to contend with, which limits my ability to be actively involved in Mom’s care. Please understand that although I want to be able to assist you, there are a variety of things I can’t do because of my health challenges. While I try to prioritize my health, it can be challenging to balance my needs with where you require the support. Can we speak further about what I am able to offer in terms of support, and if it will help you?

Lack of Knowledge: I often feel like I’m navigating Mom’s illness alone, without the support and guidance of anybody. Some of the family work with seniors and are very educated on what to do. With me, I feel like a deer in headlights, not knowing how to react, interact or even how/when to offer assistance. This lack of knowledge makes it even harder for me to cope with the challenges and leaves me feeling overwhelmed. Can you point me in the direction of some educational sites that would help me better understand Mom’s diagnosis?

Uncertainty about the Future: The uncertainty surrounding Mom’s illness fills me with dread and anxiety about what the future holds. I struggle to come to terms with the fact that Mom’s condition will only continue to worsen over time, and I often find myself consumed by thoughts of what lies ahead. Is dementia genetic or hereditary? Is it something that you or I could develop too? This thought makes me want to block “dementia” out of my mind, and I guess you and Mom really take the brunt end of that.

Please know that despite these challenges, I love Mom dearly, and I want what’s best for her.

I’m committed to providing assistance where I am able, to help take the burden off you and share some of the responsibilities. I’d like to give you a formal appreciation for all that you do for Mom, it truly doesn’t go unnoticed or unappreciated.

While I want to be more involved please understand that I struggle with the above and may also require some support in navigating this new challenge with you. Let’s talk in-depth about this soon, I will call you soon to arrange a time.

With love,

[Family Member]

Did this letter help you bridge any communication gaps with family members? Let us know what other points we can add to our letters in the comments below!

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