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10-28-2017 11:45 AM
Dear Faye Malone,
Thank you for sharing your story. It aids more than Margaret's research, which is very important! What i appreciate about it is that you take care of yourself, including having your self hospitalized so you can have your own needs met and learn some new skills to keep yourself on an even keel, mentally and emotionally. That is so important!
I am also encouraged to read that there are other family members who help. Your mother is surrounded by a circle of care. that is AWESOME. Too many times i read on here about caregivers who are the sole providers of care. which is not fair at all.
Finally, i am glad to read that you pay for outside help.
So glad you wrote, Faye. You are amazing. Write some more if you like!
10-27-2017 04:37 PM
I have been caring for my 98-year-old mother now for two years. She is easy to get along with, always grateful, and not demanding. That doesn't make the full-time job any easier.
I find the hardest thing is cajoling her into drinking enough water, and I simply cannot get her to do any exercises. Someone else commented that their loved one often says, "I just don't feel well, but I don't know why." I hear that frequently from my mom too. As a result, I'm always wondering if that is normal, or if I should be getting her to a geriatric specialist for analysis. (Our family physician just says she is doing well except for arthritis.)
Another thing that adds to my stress is food. Mom eats well, so long as she doesn't have to decide on anything. Whatever I think up and prepare, she eats well. Sometimes I happen on an item that she really enjoys, like fresh peaches this summer, but most of the time it's a guessing game, and I never know if I've provided her enough protein per day.
I am not a trained nurse, so I often feel that I'm not doing enough, or not doing the right thing. I have not yet sought out any community resources, but think I need to.
Good luck with your research!
10-27-2017 03:48 AM
I have lived with my mom since 2008 because I was recovering from an arterior venous malformation aka AVM procedure that affected my left side At that time, the doctors predicted it would be months before I could walk. My mom was 84 yrs old at that time, able bodied, stil driving. I am 95% recovered so I live with her permanently.
In the past two years, her physical and mental health has declined somewhat. She stopped driving approximately three years ago), which was a real blow to her. She is a retired LVN due to back injury she received many years ago on-the-job. She had always been active, and this has not set well with her.
In response to your inquiry. Her primary doctor has told her these past few years that she is one of the heathiest 90+ yr old patient that visits with him. However, whenever she awakens "not feeling so well," she will respond with "nothing hurts, I just don't feel well." Everyday, something is wrong At one point, she was calling the doctor to complain.
I have two siblings who assist me. However, they do not live with her!. They escort her to the "Y" to get in the pool (warm) and exercise; mybrother gets in the water with her and exercises with her. When she returns home, my sister assists her in the shower which relaxes her.
Her memory is not good (she recently had a CT-scan) to determine if there are signs of dimentia. This was suggested by her primary M.D. My siblings note that she has began to ask the same questions, and when we respond, she pretends that she knew the answer to the question asked (did that make sense). I let her know that she never has to worry about us placing her in a home; that we will always take care of her. I did not mention that for the past year or so, she has to use a walker (inside the home) as well as outside because she started falling about one year ago. This really did not sit well with her. Additionally, we purchased the "alert alarm" for her when I am away from home. We keep up with her appointments, medical, dental and one of us (siblings) escorts her to the doctor and talk to the doctor, as needed.
She has not accepted "growing older" at all! Her sister is 96 years old and continues to drive (not on freeway), is active and alert. She lives in the same town and my mom spends the night with her. My aunt's spouse passed about 4 years ago (he was 93) as the result of a slip and fall at Walmart and never recovered! He was quite active at least 4 years before he passed.
It has been quite difficult for me because I am limited as far as lifting (my left hand is 10% mobile). I drive daily, run errands, grocery shop, wash, clean house. However we have a person who comes in 2xs every other week, but it has gotten a bit much for me so I have talked to my mom to have her come in 2xs wkly.
It has been quite cumbersome at times. I committed myself to the hospital a coupole of months ago due to depression and anxiety. The 7-day stay gave me an opportunity to rest, attend groups, and have my meds changed. I followed up with an 8-week outpatient cognitive behavior program that was tremendous and provided me with tools to address my depression and anxiety. I am much better!
I did not want my mother to feel that my hospital stay was about her and sat down with her to discuss how she and I can help one another! My siblings have been helpful.
I am hopeful my response is helpful to you. If you need further information, please let me know!
10-26-2017 10:31 AM
The actual day-to-day caregiving -- a grumpy, noncompliant patient. I've cared for my son, who has asthma, more times than I can count -- both in and out of the hospital -- and he's always so good natured and happy to do whatever he's supposed to do.
I've cared for my severely autistic, non-verbal, adult step-son. He can be less compliant, but he's relatively easy to cajole into doing his therapy, taking meds, getting a haircut, etc.
My husband, however, different story. Refuses to take medicine. Refuses to eat or drink. Gets grumpy about it. So I have to be the person providing love/attention/care AND be the mean medical police. All at the same time. Personally, I find that to be very emotionally draining.
No problems so far (knock on wood), getting medical issues addressed or talking to his providers.
10-26-2017 10:16 AM
I am a Nurse Anesthetist, I cared for my mother from age 94-99 years old in our home.
I am doing research and would love to hear from you regarding what you find most difficult/frustrating/perplexing about managing the healthcare for your loved one?
What do you struggle with regarding healthcare choices, medications, communication with doctors, compliance issues?
Anything at all regarding helping your loved one with medical issues and concerns, I would like to hear about your struggles.
Thank you so much, I am hoping my research will help all of us as we navigate these waters together!
Margaret Fitzpatrick, RN, MS, CRNA
- home care
- Aid & Attendance
- Frontotemporal Dementia
- home health
- home health care
- active aging
- adult day care
- anxiety management