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Grief and Loss with Alzheimer’s Disease and Dementia

From Danielle Torgerson, Hospice Social Work Intern


There are many resources where you can find a wealth of information on coping with Alzheimer’s and dementia, but I’m just going to share a little knowledge about this topic from my personal experience.

I have two grandparents with Alzheimer’s. Unfortunately, this disease has a prominent history on both sides of my family, as it is my mom’s mother and my dad’s father who has it. Plus, I had a great-grandmother (on my mom’s side) and a great-aunt and great-uncle (one from each side) who also had it.

This disease is awful! It is very hard to watch someone you love forget everything and everyone they once knew. The process is often quite slow, so family members have to watch this progression over a number of years.

Due to the process of this particular disease, people often grieve, not only at the end of a person’s life and after their death, but throughout the entirety of the illness. Family members grieve the little pieces they are losing of their loved ones day by day.

I have often heard Alzheimer’s and dementia compared to other illnesses. Is it better or worse? I don’t think there is a perfect answer to this question. Every situation is different, and everyone has their own opinions and feelings about their situation and the illness they’re facing.

On one hand, people with Alzheimer’s and dementia forget everything, whereas many people with other types of physical illnesses don’t lose their mind. On the other hand, some people think it would be better to forget so that they really don’t know the seriousness of their condition or what’s happening to them and don’t remember being sick or uncomfortable. With that, however, they lose the memory of their family and everything else they enjoyed. Many people feel that with Alzheimer’s and dementia, you kind of lose your loved one twice – once when they no longer remember you, and then when they actually pass away. No matter how you look at it, all illnesses are hard, and Alzheimer’s and dementia certainly have their own unique challenges.

In my experiences, I have found that guilt is one of the biggest emotions you might feel and patience is probably the main quality you need to possess in working with Alzheimer’s and dementia patients.

It is very hard to deal with repeated questions, confusion, anxiety, and any other issues the patient may be having. This is especially difficult because it is likely not the norm for your family member. It’s hard because you know that grandpa, mom, sister, or whoever should know this information. The unfortunate fact is that they really don’t know that anymore, but it’s hard to accept.

It is also hard to understand why they can remember some things and not others. For example, they may remember something as simple as the fact that you are coming to visit and get upset if you don’t, but they may not remember something that seems very important like the names of family members.

Something my dad has always wondered is why they can remember the question, but can never remember the answer. My grandpa can ask him the same question over and over because he remembers what he wanted an answer about, but can never remember the answer he was told. It’s all part of the progression of the disease and the “plaques and tangles” that start to cloud the brain, piece by piece.

This can change day by day, too. Some days they can be sharp and remember more than they have in the past, and some days it may seem like they are on another planet. All of this just adds to the frustration.

This is where patience comes in. When you are being asked the same question for the 14th time (or more - literally!) or you are trying to calm your loved because they suddenly don’t recognize their own home, you just have to take a step back, take a deep breath, and remember that it is not their fault! It is the disease.

This is easier said than done, and it can happen nearly 24/7. However, they need you now more than ever! You are their memory, their calm, and something familiar. Even if they may no longer know your name or your connection to them, chances are you are still a familiar face.

Some other common components of the disease that may be very out of character for your loved one are anger/aggression and inappropriate actions (could even be sexual in nature). These things can be very upsetting, or maybe even embarrassing, to family members because it is definitely something that their family member wouldn’t normally do. Again, patience is a virtue!

Guilt

There are so many reasons guilt comes in to play. First, guilt can be closely related to patience. Maybe you feel bad because you weren’t as patient as you could have/should have been. Maybe you yelled or got upset because you were frustrated with the repetition or your loved one not understanding what you have told them several times.

Keep it in perspective! Know that it’s not easy to deal with and that as long as you do your best, things will work out. Also, don’t feel guilty for the decisions you make for your loved ones.

We have recently transitioned my grandma into a nursing home after she lived with my parents for nearly three years, and we just transitioned my grandparents to a new facility about three hours away from here (near where my aunt and uncle live).

Transitions can be hard on anyone, but especially on people with Alzheimer’s and dementia. It tends to make them even more disoriented and can make the disease progress more quickly. Neither situation has been easy, but it came down to an issue of safety and care.

My grandma wrote a short “book” of her own experiences in taking care of her mother, and one of the first things she stated was that she didn’t feel that family members should be taking care of their loved ones with Alzheimer’s because it is very difficult and a 24/7 job. This has really helped my mom with her feelings of guilt in transitioning grandma. I don’t know if I agree with her statement completely because we want to do it out of love, but there just comes a time when it is too much to handle.

Family dynamics can play a big part in all of this, too. Maybe you don’t have a lot of family support and are having a hard time finding help, or maybe you have lots of family willing to help and can take more breaks and keep your loved one home longer.

Every situation is unique. Take time for self-care. This is very important! There comes a time when transitioning your loved one to a nursing home may be as much a part of self-care as it is better care for the patient. Because of the specific challenges of this disease, caregiver burnout is very common. It just reaches a point when it is no longer feasible to keep them home for many reasons, as hard as it may be to accept. You can’t care for your loved one if you haven’t taken care of yourself first! It also helps with caregiver role strain. My mom has started to become more of a daughter again instead of caregiver all the time. With a little rest and relaxation, you may be able to have a little more patience and feel less guilty. Just remember that your loved one is in there somewhere, and deep down they love you and really appreciate what you’re doing for them, no matter what your personal situation is. I commend anyone who has taken care of a loved one with this disease (or any disease for that matter). It is not easy to watch their decline, but it is rewarding to know that you are helping them in their time of need. Keep on doing what you’re doing – I’m sure you’re doing just fine! And if you’re ever feeling alone or questioning yourself, just know that there are people and agencies you can reach out to for support and assistance. I’m not an expert on this disease by any means, but I hope some of my insight and tips may be helpful to you and your loved ones! Thanks for reading my story!