My Grandmother is now on hospice.

Hello @jlm1980 I am Scott and welcome to Mayo Connect! It is nice to have you here as part of our caregiving discussion community. I was my wife's primary caregiver during her 14+ year war with brain cancer. My wife was in her 40s when she was diagnosed, but was in home hospice for 14 months.

I understand that each patient and their healthcare journey is unique as are each of us caregivers. Personally the only way I could deal with caregiving was 'one day at a time'. Caregiving is grueling, grinding, and high demand so don't be too hard on yourself. I also gave up trying to get things perfect and 'good enough' became my mantra as I juggled all the demands of caregiving, work, cooking, cleaning, laundry, etc.

I can also say our hospice team was a wonderful addition to my wife's care team. The nurses were wonderful, the medical director was a gem, and (at least here) getting all her meds home delivered and on time, every time, was a significant help to me.

Are there certain aspects of caregiving that you find particularly challenging?

Strength, courage, and peace

I'm replying to the question as to whether there are certain aspects of caregiving that I find challenging. Having been a caregiver for the past several years for my 77 year old wife French wife Christine, who suffers from Alzheimers disease -- and who mostly speaks French these days,, I would say the most frustrating aspect for me is the difficulty in finding information on the resources available to families in need of senior care.. I retired from full time work at the age of 70 just at the point where my wife needed someone to be at home with her on a full time basis. I was fine with being a full time caregiver and to keeping my wife at home, but I thought it would be a good idea to also offer her some stimulating activities outside the home. She had always been active and was a great walker. So we began by taking long walks around a nearby golf course. I had been a daily lap swimmer for more than 30 years and had joined the local Y to swim and was familiar with the Y's menu of programs. So I gave up lap swimming for a while and we both enrolled in the Y's Zumba gold class, where I happened to be the only male. The walking and the Zumba worked fine for a couple of years, but I began to notice that Christine could not really keep up with the Zumba. I began looking around for other activities more suitable for her. Completely by accident I stumbled upon a small scale local daycare center where she could mix with other people for 4-6 hours per day Monday- Friday. A lovely personable registered nurse ran the center and the program worked wonderfully for Christine. The center was private pay, but reasonably priced. It allowed Christine to socialize and gave me a break to swim, go to the library, shop for food, etc. Unfortunately the daycare center closed after 18 months for lack of clientele capable of paying the reasonable fees. So we were back to square one just at the point where Christine was no longer really able to walk very well and to socialize. So I enrolled her in a local home care program where an aide or nurse came in five days a week for four hours. That again worked pretty well, since I was able to get out of the house on most days to run errands, etc. Our good luck took a dive a year ago this month when I was hit by a car as I walked across the street in a pedestrian crossway on a green light that turned red as I was midway through the intersection. I was knocked to the ground by a speeding car turning the corner, taken by ambulance to a hospital for surgery on a broken ankle and placed in a rehabilitation center for ten days to learn to use crutches, walkers, and a cane. During that time the social worker who was working with us had Christine placed in a residential skilled nursing facility where she remains to this day. When I got out of the hospital I went to the Mayo Clinic for my annual follow up tests for surgeries I had a few years ago. I doubt if I will be able to make the trip to my native state of Minnesota this year, although we are tentatively planning to move back to St. Paul, where I was born and grew up. I return to my point about the difficulty of navigating the bewildering universe of senior care options. When I was faced with finding the best care options for Christine, I scoured all the local resources online and in person. I went to the county Center for Aging and discovered that I probably knew more about the resources available than the adviser who met with me. I also discovered that the Center for Aging was expert in finding appropriate solutions for families with few resources who were eligible for Medicaid. If you were neither rich nor poor like our family, you were pretty much on your own. When we move back to Minnesota, I hope to work on beefing up information resources necessary to help families navigate the confusing world of finding appropriate senior care. It's ironic that resources for finding child care are abundant, but practically non existent for seniors. Our journey through this universe has been interesting to say the least and certainly varied, ranging from Zumba to day care to residential care. But it has also been frustrating, since we really could find no source of reliable information on the resources available to us. We had to learn pretty much everything the hard way --on our own.

@jlm1980

First of all thank you taking on being her caregiver. It is not an easy journey.

Since she is under hospice care they can be a great help to you. They can help with bathing. Some hospice agency will come daily to bath and other may do it less often. Accept any care you can. You need to keep her skin in great shape to avoid skin tears. My mom's hospice carers mixed body cream about half and half with petroleum jelly and applied it all over her body. Mama's skin looked beautiful. If she is on oxygen do not use petroleum products. If she is bedridden reposition her every couple of hours to avoid bed sores.

There may be a time your grandmother may have to wear diapers. That was a hard task for me... pre-hospice care. I had watched the nurses in the hospital and that helped. I watched many youtube videos on it too. I finally figured out what worked best for me and her.

Take advantage of a hospice nurse coming to visit your grandmother. Do not hesitate to ask her questions. Your grandmother may become unable to eat or drink. She may take ice chips or popsicles for awhile. The nurse can supply swabs to use to help keep her mouth moist. Have something on hand to moisten her lips.. they will dry.

Dealing with all this was hard for me too. Talking with her even after she could no longer speak was important to not only her but to me. I thanked her for everything I could think of ... including the tea parties, fixing my Humpty Dumpty doll and making my clothes. Little things that were very important things to me.

My prayers for you as you go through this journey.
ZeeGee

@djangomay, Thank you for your wonderful caregiving of your wife with her progressing Alzheimers and also for your many efforts to seek out options to help both her and you. Every primary caregiver needs some respite from the 24/7 task. Applause to you for continuing to find other options for her as her illness progressed and capabilities decreased.

This had me nodding my head vigorously in agreement: "When I was faced with finding the best care options for Christine, I scoured all the local resources online and in person. I went to the county Center for Aging and discovered that I probably knew more about the resources available than the adviser who met with me. I also discovered that the Center for Aging was expert in finding appropriate solutions for families with few resources who were eligible for Medicaid. If you were neither rich nor poor like our family, you were pretty much on your own." This was so true for me and probably millions of other caregivers as well.

With the numbers of aging Americans increasing rapidly, the need for more help and resources is more important than ever. Yet, as you write: "We had to learn pretty much everything the hard way –on our own." The stress and strain of daily caregiving can take a woeful toll on the caregiver.

As @IndianaScott shared: " I also gave up trying to get things perfect and 'good enough' became my mantra as I juggled all the demands of caregiving, work, cooking, cleaning, laundry, etc."

@jlm1980, My wish for you as you lovingly take on the daily care of your beloved grandmother is that you will make it a priority to take some time out for respite care of yourself. Sending you best wishes as you and your grandmother begin this new journey together.