Tag: Dementia

UNDERSTANDING MY LIMITS

Published on by Aimee EddyLeave a comment

Being a caregiver is a very hard and trying job. We love our loved ones (LO), but taking care of them can be very difficult. We are the ones they know well and the ones telling them what they can or can’t do, cleaning up after them, and in some ways invading their privacy. We take on a role that is self-sacrificing. We often give up our own needs for the ones of our LO’s, but even caregivers have limits. We as caregivers must understand our limits and know when to ask for help.

My LO is in the early stages of dementia, but there is still a lot I must do. I have to fix him a lunch and set up reminders for him to eat it before I go to work. I have to remind him to shower and change his clothes. I have to watch his diet because he has diabetes. I also have to keep track of all our finances and important matters. Much of what I must do does not come easily. He gets mad at me and argues with me. It’s hard to tell a grown man he needs to shower and change his clothes without insulting him. He takes offense.

I often feel like the bad guy. I’m the one who tells him he can’t have his sugary sweets or drinks. I’m the one who has to enforce the fact that he can’t drive anymore or work. I’m the one he says is always nagging him to do things he forgot to do and who takes things away from him. It’s hard to be the enemy. It hurts and takes a lot out of me emotionally. Sometimes I don’t want to argue so I let him have that doughnut or lemonade. I want things to go back to the way they used to be when we worked as a team, but I know things will only get worse.

I go to therapy to talk about what is going on with my LO and to keep my mental health stable. My therapist has been telling me for several sessions that I need to find in-home care for my LO and I need to know my limits. I have been resisting getting help because I know he won’t like it. My LO is determined that he can take care of himself. He can to a point. There are things he needs extra help with, and I have been trying hard to help him. He’s very stubborn and seems even more stubborn now.

My therapist is right. I need to know my limits and understand not to push them too far. There’s nothing wrong with asking for help. My LO is not quite old enough to get help through Medicare. I texted a good friend about needing to find in-home care for my husband. She suggested a program called Voices for Independence. It’s a program that helps people with disabilities be able to live their lives independently. Dementia is a disability and an illness. I called them and we have an appointment in our home this Thursday.

Unsure how to tell my husband about this appointment, I posted on a dementia support group on Facebook. They told me to say I need help, which is true. I need help because I’m pushing myself beyond my limits and it’s affecting me emotionally. I can only do so much for him. I know some care givers have it a lot harder than me, but I also know if I understand my limits now, it will help me in the future when my LO’s illness progresses. There’s nothing wrong with asking for help.

I know I must take care of not only my LO, but also my mental health. Being a caregiver takes a lot out of us mentally and physically. We as caregivers must also take care of ourselves and know when to seek extra help even if that means getting another caregiver, looking into nursing facilities, or turning to friends and family for support. Understanding our limits and obeying them will help us be better care givers.

I’m hoping the appointment with Voices of Independence will go well Thursday. If not, I will investigate other options. Knowing I have limits and being willing to ask for help keeps me standing in the light of recovery.

CAREGIVING AND MENTAL HEALTH

Published on by Aimee EddyLeave a comment

Mental illness is a rough disease, and even in recovery you must spend each day managing it. When you throw extra challenges in your life, like dealing with a loved one (LO) with dementia, staying in recovery becomes a bigger challenge. You no longer are just taking care of your illness; you are also taking care of someone else’s illness. This makes staying in the light even harder.

My loved one is in the early stages of dementia. He’s independent to a point. He is still able to stay home while I work, and he can help me with some stuff around the house, but he still needs my help with a lot of things. I take care of his medication, make his lunches before work, and leave reminders on Alexa for him to eat it. I also remind him to take care of his hygiene, I manage his diet for diabetes, I keep track of his appointments, and I also remind him about small stuff too. I also have to handle changes in his mood like arguing and anger outbursts.

He’s young, only in his sixties, and I’m only fifty-one. It’s so unfair that he has this illness at such a young age. We should have many more years to make memories, but we don’t. We must make every moment count now. I’m sad, angry, and frustrated. Some days I want to lie in bed and cry. I wish I had a magical wand to take this illness from him. He gets so frustrated when he can’t remember things and it breaks my heart.

So much has been taken away from him because of dementia that it feels like he’s losing everything. He can no longer work, he can’t drive, and his memory is fading. At times I’m the bad guy because I must tell him repeatedly, he can’t drive, he can’t work, he forgot to shower, and much more. He gets mad at me, and I try not to take it personally, but it hurts.

Dealing with my LO’s illness is very emotional and threatens to throw me back down the hole of depression, but I can’t let it. When my LO was diagnosed with diabetes I got

depressed. I knew I was going to have to manage it and make sure he follows a healthy diet on top of managing his dementia. All day at work I felt like crying, I was very sad, and just wanted to hide. When I got out of work, I told my LO I was sick and went to our room. I lay in bed crying until I fell asleep. I teetered on the edge of that dark hole.

I realized I need to take care of my mental illness while taking care of my LO. I used a program through work to help me find a therapist. I’m not in a depression, but I needed someone to confide in and to talk about my feelings to to stay in recovery. I found a therapist who understands what I’m going through and she is very good. I told my psychiatrist about my LO so he can keep track of how I’m doing. I confided in my support team. I also joined mental health and dementia support groups online.

All caregivers must take care of themselves as well as their loved ones, but it’s extra work to take care of your mental illness on top of caregiving and to stay in recovery. I find it hard to manage my medication on top of my LO’s, but I know it’s important. It’s also important to use coping techniques like journaling, relaxation techniques, finding positives, and grounding techniques. It’s okay to need a break from your LO too. Self-care is also important. Take time for yourself like having someone stay with your LO while you go out for a while, take a relaxing bath, eat healthy, exercise, take care of your hygiene, and find time for your hobbies.

Caring for yourself and your mental health is as important as taking care of your LO. I make my illness as much of a priority as my LO is. This helps me stay in the light of recovery.

MISCONCEPTIONS AND DEMENTIA

Published on by Aimee EddyLeave a comment

Dementia is an awful disease. It robs people of their memory, of themselves, and of their independence. It affects not only the person who has it, but also the people who love him or her. It is a hard illness for a caregiver to deal with, and it is devastating for the one with the illness. Like with any illness, it comes with well-meant intentions and misconceptions of others.

I have a loved one who was diagnosed with dementia. His illness has taken me on an emotional roller coaster. I have turned to friends and my therapist for support. I have found that a lot of people understand, and some don’t. It angers me when people joke about it or have misconceptions about this illness. I want my loved one to be taken seriously and to be treated like a person with feelings, but sometimes that doesn’t happen.

I told a customer of mine that my loved one had dementia, and his reply was, “I’m a little demented too.”

I found his joke insulting. Dementia is not a joke and should be taken seriously. I wanted to yell at him for his comment, but since he was a customer, I just smiled.

I’ve gone to public places and have seen people my loved one and I know. They say hi to me, but not a word to him. I found it odd. Later the people who ignored him told me they didn’t know if he remembered them, so they avoided him. First, my loved one is in the early stages and still remembers people. Second, even if he had forgotten them, he shouldn’t be ignored. He has feelings and can still get hurt. Even if you must reintroduce yourself, you should still acknowledge the person with dementia. It angers me when they ignore him. He’s already feeling bad about having this illness, and now people are avoiding him.

Some people say to me, “He seems fine to me.”

He may seem fine in public or when he’s around people for a little bit, but they aren’t around him enough to see his struggles. I see his frustration when he can’t remember something he told me a minute ago. I must set him reminders on Alexa and yet sometimes he still forgets. I tell him the same things over and over again. I remind him to do simple things like when to eat, when to take a shower, when to put deodorant on, and when to take medicine. He may seem fine to the public eye, but he’s struggling behind closed doors.

Some people told me, “I forget things too because of old age.”

 Memory loss because of old age and forgetfulness are totally different than dementia. I’m a very forgetful person. I write lists and then forget where I put them. Dementia is much more than forgetting a list. It’s forgetting how to get to a place you’ve been to most of your life. It’s forgetting the same thing continuously. I have told my loved one ten times within minutes what time I get out of work for him to forget again. Not only is his memory fading, but a part of him is also fading. Parts of his personality are changing and it’s only going to get worse the further his illness progresses. I just pray he’ll never forget me, but it is a possibility.

I’m working hard to dispel the misconceptions of dementia and to be there at my loved one’s side. On the positive side, I have people who have put my loved one on their prayer chains at church. I have had people share their experiences and give me some excellent advice.

What a person with dementia needs is kindness, love, understanding, and patience. What a caregiver needs are love, support, and understanding. The caregiver goes through this illness with their loved one. They are feeling a lot of emotions, taking on a lot of responsibility, and pushing through each day. Put your misconceptions aside and listen, offer to make a meal for the caregiver, offer to sit with the caregiver’s loved one, offer to help with doing dishes or some other chore, and be willing to listen and give moral support. For the one struggling, don’t ignore them, spend some time with him or her, be patient, give hugs, and be willing to listen. To find out more on how to connect with someone with dementia read Dementia: Keys to Connecting and Caring for Your Loved One: Wert, Beverly J: 9798270166731: Amazon.com: Books.

I stand at my loved one’s side, supporting him, defending him, loving him, and being patient. Making each day special and taking care of myself helps me sit in the light of recovery.

FADING AWAY

Published on by Aimee Eddy6 Comments

Here with me

But parts of you are

Fading away

I try my hardest

To be strong

I fight my tears knowing

In time more

Of you will fade away

I stand strong for you

But inside I feel weak

Each memory is precious

For so long I have

Leaned on you

Now I must be your rock

I cry when you don’t see

I confide in friends

I find support where I can

I practice self-care

I returned to therapy

As parts of you fade away

I will fight to

Stay in the light

Nurturing myself

Leaning on broad shoulders

Helps me stay in

the light of recovery