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Hi everyone,
I am in my early 30s and am about the become the primary caregiver for my 85-year-old grandmother. She has congestive heart failure and diabetes, but is still of relatively sound mind. She is able to remain in her home for the time being. I've just moved back to my hometown and will be taking care of her (medical appointments, transportation) while working part-time. I'm wondering if anyone has any advice about particularly challenging caregiving activities. What tasks were the most difficult/time-consuming to coordinate? Was there anything that surprised you or you wish you had known looking back? Any help and advice is very, very appreciated. Thanks so much!

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You are fortunate to be able to plan! Good for you for asking the questions. :-)

My mom has end stage renal (kidney) disease and some dementia. The dementia is worsening with dialysis, which is apparently common. One thing I really didn't understand or expect when I started caring for my mom was that sooooo many health care workers would start making demands on my energy and time, and would treat me like I am "on call." This is everyone from nurses to administrators to dieticians to occupational therapists to surgical booking.

When you are a caregiver, people start treating you like being this person's caregiver is your sole responsibility in the world. You are basically now in the position of managing not only your life, but that of your elder person. Maybe if I'd had kids, I would have understood better what that meant, but I didn't.

It was really overwhelming to me in the beginning, with things suddenly coming at me from all directions. It didn't seem to matter if it was urgent or important or a big nothingburger - I really felt the pressure to be "available on demand" to talk to someone about mom, or be somewhere with mom, or do something for mom. Always on their schedule, regardless of what I might have going on. I had to start organizing my life in a whole different way, and I also had to stand up for myself, for my right to have my time and energy respected.

The 3 things that have helped me most are the renal unit social worker (invaluable!!!), reliable friends who help out with mom, and keeping a calendar of MY schedule just for the renal team, which mom takes with her to dialysis.
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Hi Taloboda and welcome.
I'm sorry that you have so much responsibility at such a young age. Make SURE you carve out some "fun" time for yourself. That's imperative to staying fresh in your caregiving duties. It's great that she doesn't have dementia. That makes it easier. You can communicate with her. That's a blessing.

I'm assuming your question about caregiving activities is geared to physical care. I guess the most difficult thing I (we) did was get my 94 year old demented mom in the shower every 3rd day. I was scared that one of us would slip. My husband was helping and stood by the whole time "we" were taking a shower. Fortunately, we had a built in seat in the shower so that really helped. I'd wash her first and dry as much as possible, then my husband and I would help her out of the tub and he would finish drying her while I showered. It was a production but, fortunately, no one ever fell. If your grandma needs help bathing, make sure you have a non slip tub mat, grab bars and no throw rugs or rubber backed rugs that don't move.

Since grandma has CHF, she probably gets short of breath fairly easy. Try planning only one activity a day and plan for rest breaks during the activity if it takes a long time. If you can space physical activities out over days (doctor's office one day, out to lunch another day, etc.) it might work better for her.

Watch for swelling of her legs and feet, weight gain, fast heartbeat. Her activities are controlled by the CHF. Some days she just may be too tired to do much. If she's short of breath, it will be easier to breathe sitting up rather than lying down. There may come a time that she has to use oxygen. They have portable units and oxygen concentrators so she can still go out.

I would read up on her two health conditions so you'll know what to look for "in case".
You will learn the "hands on" way. Good luck. Your grandma is a lucky woman.
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I hope you're using the word "co-ordinate" loosely. Because as Carla describes so well, the real difficulty is the things you can't plan. How sympathetic is your employer going to be, for example, if you get called to an emergency? - such as grandma locking herself out, or falling down, or getting into a panic over nothing, even.Also. Are you going to be living with your grandmother in her home or just nearby? Either way, and I know it sounds harsh to quote this: "placement comes first." I applaud your support for your grandmother's wishes but you need to get Plan B ready *now.*
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The caregiving activities that bother me the most are the ones I didn't offer to do or plan to do. Meaning, I expected to be in control of what I did for my mother. I expected that I would pay attention to how she was doing and what she needed and I would take care of things that I could see needed to be done. I didn't expect to be called to come over at a moment's notice because my mother had taken the sheets off her bed and needed clean ones put on, or because she'd had new furniture delivered and needed me to set up the new furniture and get rid of the furniture she was discarding. I wanted to offer help out of the goodness of my heart - I didn't want to be at anybody's beck and call to take care of whatever they thought needed to be done. Honestly, it still bothers me to have something dropped on my plate that I didn't know about and didn't plan on doing, and I've been at it for almost 7 years.
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