Boundaries with dementia patient

Gtatia, Forgot to mention that the Alzheimer's Association can connect you with agencies that offer financial assistance for respite care. Call their help line at 800.272.3900. In NJ they offer $1000 support for use in respite care, it may differ in other locations but is worth a try - Please call them, it may provide you with a little break from the daily routine.

@scottrl , u may find that verbal boundaries are simply not remembered. Letting the call go to voicemail and setting up your phone to silence automatically during sleep time works better

@kjc48 Dear Karla, thank you so much for taking the time to write this thoughtful response. The sleep deprivation/exhaustion really does a number on my mind and I start to feel “off”.
I appreciate your understanding and the suggestions you give are all very realistic and manageable. I need to work on “acceptance” some more. It’s the unknowns and the unpredictability that make life very hard on all dementia caregivers.

It makes me feel better knowing that the photos I post can bring a moment of joy. I know that so many are struggling and each situation is unique. I’m grateful to have found this community and all of the kind souls to walk this “wild & wooly” path with! Feels a little less lonely out here 🤗❤️

@gratia I recognize that you are probably much younger than I am - with so much responsibility caring for your mother. I think being younger, makes the acceptance and adaptability a little harder. All your dreams just go out the door with this disease, painful at best, and harder for the younger person that has a full life to live and doesn't want to be tied down. I can only tell you, try to find the hopeful silver lining, in all of this. Your mom won't be here forever, and then you'll be able to move forward, enjoy living, and know that you took the best care for her you could. You gave her life, even though her faculties had diminished. Get help, you don't and shouldn't do this alone. Reach out to as many people as you can to preserve your own sanity. Accept whatever help you get. Your mother will be fine, with more people assisting her, and you'll be able to breathe, and not feel so contained by all of this. When we lose hope it's devastating. I try every day, to just get up and find the goodness in things, even though it's a battle for me too. The last two years have been awful, and I keep hoping, through those sunny daffodils you post, that I'm in this open field of hope and opportunities. I see them in all your pictures, and that my friend, gives me hope. Best, Karla

Hi Scott, yes, it’s so important to take care of ourselves.🤗 I’m started to worry about the fallout from caregiving. Noticing impact on close loved ones. It’s just such a hard disease to navigate 💔

Ive been in the health care industry over 20 years and specialize in Altizmers/ dementia and having my mom having the sign of the disease was and is devastating. We as people need help supportin these situations because it can be a lonelyand stressful draining time. I encourage my mom to eat more healthier. I view her medications before she take them when shes with me. Socializing with those with dementia helps there memory better . Them being alone all the time does not help there mental and emotional state. Treating them normal and reminding them to laugh much as possible and communication is key. @gratia

@gratia I think a boundary is whatever we want it to be on any given day. Seeking out peace for an hour. A walk for 30 minutes to capture that beautiful green door shot you took. Or those sunny yellow daffodils that bring all of us joy. And signing onto Mayo Connect first thing in the morning, to get our sliver of hope before our day starts. Boundaries only apply in certain situations, as in caregiving, there are just things we simply have to do that we don't want to do. So the boundary becomes, for example, if she's unkind and rude on that day, just walk away. Or find something soothing, like music, for her and for you, and then walk away. Let the music fill her soul, and try to keep her calm. The boundary might be foregoing all the extra work in the kitchen, and selecting nutritional convenience food, already prepared, that still gives her a good meal but doesn't wipe away every bit of energy you have left. The boundary might be getting someone else to bathe her. As for your identity, your feelings and the like, they're still there. Workload is exhausting for people. And caregiving is workload. So, the boundary becomes like you did, getting your sister to help. taking that much needed trip like you did, but maybe doing it, once a month and let your sister and some companion care take over. Changing the venue, I believe, keeps you, YOU, and intact, so you can still do some of the beautiful things you used to do, that make you YOU. Find the joy in quiet moments. As for your goals and dreams, that becomes an adjust and adapt for now. Nothing stays the same forever although when we're dealing with it, it feels like an eternity. Chin up, take those beautiful pics, and just continue to share your thoughtful and meaningful posts. It's good to have @gratia on this site.
Best, Karla

@kjc48 what a kind and helpful post - thank you! You reminded me of something Maya Angelou said: "Every storm runs out of rain."