Tips, Advice and Insights for Newbie Caregivers

As a new caregiver, I am excited to embark on this rewarding yet challenging journey, and I’m eager to learn as much as possible to provide the best care for my loved one. Understanding that each caregiving situation is unique, I would greatly appreciate any tips, advice, and insights from those who have experience in this field. Whether it pertains to managing daily tasks, navigating complex medical situations, or finding avenues for self-care, I am all ears for any guidance that can be provided. I believe that by sharing our experiences and insights, we can support one another and continually grow to become better caregivers. I look forward to being part of this community and learning from each of you.

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Hi Hhamilton,

Welcome to the caregiving community and congratulations on entering this new and meaningful chapter of your life! Your enthusiasm and openness to learn are truly admirable, and I’m sure you will find plenty of support and guidance here.

From my own caregiving experience, I can offer a few general pieces of advice that may be helpful:

  1. Be organized: Keeping track of appointments, medications, and other care-related tasks can be overwhelming. Set up a system that works for you, whether it’s a physical planner, an app, or a shared calendar with your loved one and other caregivers.

  2. Communicate openly: Honesty and transparency are key, both with your loved one and with other caregivers or family members. It’s important to discuss needs, preferences, and any issues that may arise, as well as delegate responsibilities when necessary.

  3. Be patient and flexible: The caregiving journey will likely involve a series of highs and lows, so it’s essential to be patient and flexible. Understand that some days will be better than others, and adapt your approach as needed.

  4. Educate yourself: Learn as much as you can about your loved one’s condition and treatment options, as well as available resources and support services in your community. This knowledge will

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I’m glad you’ve joined our caregiving community Hhamilton, and I am confident you’ll find the support and guidance you’re looking for. Caregiver1 provided some excellent tips, and I’d like to add a few more from my own experiences:

Take care of yourself: As a caregiver, it’s essential not to neglect your own physical, emotional, and mental well-being. Make time for self-care, such as regular exercise, healthy eating, and relaxation techniques like meditation or journaling. Remember, you can’t pour from an empty cup.

Connect with others: Building a support network of fellow caregivers, friends, and family members can provide invaluable emotional support. Don’t be afraid to ask for help or share your experiences – you’re not alone in this journey.

Stay informed: Stay up-to-date with the latest research, treatments, and caregiving techniques related to your loved one’s condition. New information and resources may become available that could improve their quality of life or make your caregiving role more manageable.

Set boundaries: It’s essential to establish and maintain boundaries in your caregiving role. Remember that it’s okay to say no, take breaks, and prioritize your own needs.

Practice empathy and compassion: Understand

Hello Hhamilton and welcome to the community!

I, too, am happy to see your enthusiasm and eagerness to learn and grow as a caregiver. Caregiver1 and MS92 have both shared wonderful tips, and I’d like to offer a few more that I’ve found helpful in my caregiving journey:

Establish routines: Creating consistent daily routines can provide a sense of stability and predictability for both you and your loved one. This can make day-to-day tasks more manageable and help reduce stress levels.

Celebrate small victories: Caregiving can sometimes feel overwhelming, so it’s essential to recognize and celebrate small accomplishments – both yours and your loved one’s. Cherishing these moments can help boost morale and remind you of the positive impact you’re making in their life.

Be open to change: Your caregiving journey may evolve over time as your loved one’s needs change or your own circumstances shift. Embrace these changes and be open to adjusting your approach and strategies when necessary.

Cultivate gratitude: Practicing gratitude can help improve your overall well-being and provide a more positive outlook on your caregiving experience. Take time each day to remind yourself of the things you’re grateful for, whether it’s spending quality time with your loved

I spent 12 years caring for my Dad and then my Mom. First get a good medical evaluation for a hospita that has an Alzheimer’s specialty (I used The Wein Center of Mount Sinai Hospital in Miami Beach, Fl… Then contant Alzheimer’sAssoc for local contacts. These two sources gave me huge help, advice and support. Check with family lawyer to prepare documents immediately so you can have assess to your loved one’s assets, etc. Lawyer up NOW! Its important and not costly. Check for ALL local Day Care Centers for Alzheimer’s victims - they can save everyone’s sanity. Then, learn golden rules of a carer. Words get confused, so don’t fight it! If you are Sally today and Harry tomorrow, IT DOESN"T MATTER, does it? Look in their eyes to see the glint that you understand them DON’T frustrate the victim or you will have an impossible journey. Remove all possible frustrating elements of the victim’s life!!! Where they like their shoes to be, what shirt they like, what chair they prefer. Avoid locking doors except when you are not in the immediate area. Let your loved one go outside at will, alone if they prefer - BUT, follow behind them at a distance so they feel freedom. Frustration is the worst enemy. If you concentrate on trying for minimal frustrations, day and night, it can be fun, heart warming, and an experience that memory will recall as “job well done, and victim didn’t suffer”

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Hello. I am new to this whole full time caregiving experience. My Dad passed a couple of years and my mother was diagnosed with Progressive Aggressive Aphasia/Dementia. FTD. She cannot talk/communicate verbally (Bruce Willis disorder for those who dont know what that is). The Neurologist recommended I get her affairs in order. I also learned I am her POA, So I grabbed the bull by the horns. I’ve always worked full time and because I was taking too much time off from work to take my mom to Dr.s appointments etc. I took a huge leap of faith, quit my job, removed my mom from current potentially harmful situation. Bought a house out of state closer to other family members who have been hugely instrumental. Its been quite an adjustment. It was my mom’s wish to move out of state. I am trying to fulfill her wishes and make her happy. Since we moved, got settled, arranged for all her appts, etc. she’s become increasingly agitated and angry and acting out her disastisfaction. She is constantly angry with me 90% of the time. I am at a loss how to reach her. She just wants to do her word finds or watch TV. She doesnt want to go to group activities, for puzzles, card games, crafts, etc. I tried, but, she walked back out despite the kindness of the women who tried to coax her in and showing her their crafts they made that morning. I’ve been able to get her to go to the local dance she likes, and other functions she likes, and can kick my butt in cards with me and other friends, but If I say No to her she gets made at me giving me the finger or tries to hit me. Her Dr. gave me meds to help her with that, but, she refuses to take them and im not comfortable sneaking them into her food. I try to be happy, maintain my sunny disposition and make this time for her more pleasant. Shes just so miserable and I don’t know how to handle this behavior or interact with her to make this a positve experience for both of us except for leading by example. The roles have changed here. She still wants to be in control, but, there’s so much she cannot be in control of anymore, like driving, paying bills, anything complicated, so now Im in charge of all of it. There is so much. I am grateful for this resource to read and share what works and what doesnt with this community. Thank you again.

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I feel for your frustration. I am only one carer (former, carer for 12 years, 2 parents with Alzheimer’s). But I can give you what I learned along the way.
Change is almost always a “no-no” with victims of memory loss. I was lucky because my parents had two homes, both of which they loved, so they decided where to live “permanently” once Alzheimer’s began with my Dad. Speech became an issue with him fairly early in his 4 year battle. After about a year, the only words he could form were "yes’ and “no”. A challenge, but if phrased as a question with only 2 possible responses, no problem at all…
And NO frustration for him. Frustration and change are the two big enemies. I tried never to put my Dad in a situation to frustrate him. A major one was his ability to move around, come and go as he wanted. That meant NO locked doors. It also meant keeping a distant eye on his movements. When he wanted to walk, he went for a walk, but someone (me or my Mom or a carer) walked way behind him so he didn’t realize. Only once did he get lost and that had a quick solution. I happened to be walking behind him that day, and I just started to run toward him as if I were out for a jog and discovered him walking… A nice chat as I guided him home! Disaster averted.
Restaurant meals were and favourite for my parents, and wonderful, although needing a little planing and understanding by waiters. Dad couldn’t read by this time but he always had a menu and Mom and I knew his likes 'n dislikes. So we would suggest something on the menu we knew he liked. Never say A or B! Say that B looks great, is that what YOU decided? That solved. Then a quiet word for the server: make sure everything is cut into bite-sized pieces when it comes to our table. Different approaches for different situations, but you get the idea.
I think the biggest problem for you is that your Mom is in a totally new environment and I fear that she might never adapt. Memory problems almost always need to take into account what has been familiar. Introducing new things is difficult for a memory loss victim. Day Care might work if your Mom has always been a caring person and liked helping others. My Mom was “asked to help out” at a Memory Day Care Center. She went there with the intention to help and she was thrilled to think she was doing just that. The staff were wonderful and it worked great. If family can help, using YOUR guidelines, that would help tremendously. I wish you well on a long journey. And don’t take offense if your Mom calls you Shirley and the next day, you become Tom!!! She loves you no less and DOES know who you are. Her brain and her loving heart are just having trouble connecting as they used to! If you have questions of me, I will try to answer for you. William

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Thank you for your insight, William. She doesn’t have memory loss, yet., She knows what she wants, she can’t communicate with her Aphasia. She wants to drive, she cant. Her Dr. told me to take keys away. Because I was told she was still driving, the other people let her do whatever she wanted and she cant do a majority of major things anymore. So, I took her car keys . She’s sooo mad at me. If she gets into an accident and hurts herself or someone else, I’m responsible. She knows what she wants, she is still independent in most ways, she decorated the house the way she wanted, filled it with pictures, etc. She wanted to come here. Now we are here and I’m the bad guy. She hated it before and the people she was with before and now acts out aggressively with me. Now she wants to go back and she cant. I try to give her some feeling of control, she can cook, shower, dress herself, etc. ask her to do activities. She wants to punish me, everything is NO. However, she cant communicate, pay bills, Drive, even though she wants to, but she cant. She knows who I am, she just resents me now for fulfilling what she wanted and acting on DPOA as instructed. She’s my mom, but the roles have reversed and now I need to take care of her. I just want to do it right, and right by her. She’s my mom and I love her. Thank you again William.

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Hello lovingdaughter and ibz1492,

I am fairly new to this caregiver community, but I have been on a similar journey with my aunt, and I wanted to share some of my experiences.

lovingdaughter, I completely understand your frustrations. It sounds like you’re doing everything right, and it’s clear you love your mom deeply. However, it’s tough when the person you care for is resistant and uncooperative. I’ve found that it’s really important to remain patient and empathetic, even when it’s challenging.

Large transitions are never easy on dementia patients, and it’s common for them to be angry and frustrated. Even small adjustments like moving the furniture around can trigger unusual behavior.

One thing that worked well for us was to involve my aunt as much as possible in making decisions, taking into account her preferences even in the smallest of things. Prolonged engagement in activities that she used to enjoy, such as gardening and cooking, seemed to stave off frustration and anger.

Additionally, I totally agree with ibz1492 about the importance of giving your mom a sense of familiarity. Little things, like sticking to her preferred routines, using her favorite dishes for meals, or even having some of her favorite music playing often helped