Welcome to Let's Talk About It. In this
special section we will feature the question/topic of the month and provide an opportunity
for an interactive exchange that will help find some answers and possible
solutions to concerns. If you wish to participate, just
follow the link provided at the end of the question/topic and add
your comments and thoughts.
Name: Judy Shostak
Location: Ronan, MT
Time: 10:16 AM
I learned 10 years ago as the only female child to ask for very detailed and specific help. Avoid the generality of "I need help caring for Mom or Dad". Rather I would ask for a specific. When you visit this summer, would you plan to take Dad on 2 half day outings? Would each of you call Dad 1 time every 2 weeks and keep the visits down to about 10-15 minutes at most to avoid confusion? Since I have 5 involved (not hiding) brothers out of 6 total, I asked each to call a different week. Now each has a good weekly visit schedule with Dad and I am no longer the family news service for Dad. One of my brothers finds the trip to visit very burdensome due to health issues of his and a demanding work schedule. I asked him to fund Dad's special shoes and to arrange the shopping trip to coincide with the visit of another brother. When Mom was also alive, I asked my sister's in-law to take Mom shopping, do a girls day, make a separate phone call to Mom. In one case my sister-in-law loved to make cards on her computer, so I asked her to send the folks a card a couple of times a month. Then she started enclosing a little fill in the blanks or check sheet to that even though they could no longer write, they could reply in the enclosed, addressed, stamped envelope. Mom saved every one of those cards. I've asked another brother to balance the check book (on-line) every month that I use to pay Dad's bills. He has just volunteered to do the on-line bill paying that I had been doing, even though he lives over 2,000 miles away. We then send yet another brother a financial summary every quarter so that there are more people able to step in if anything should happen to me. The hidden benefit that I had hoped for has come about. My brothers have come to view me as their sister again, not just a guilty conscience. It took some thinking, a willingness to let them do what "they" felt they could do and the ability to find gratitude that my brothers were active if physically distant caregivers of both our parents and me. This also led to a career change from computer industry to aging services for me. Tenacity was called for and a commitment on my part to stay with this until we found something that worked. I've been the "kid of record" caregiver for my parents for over 14 years and it took most of the first 4 years to figure out that generalities don't work when asking family for help. Ask to have the lawn mowed, trash taken to the dump and other chore assistance because it is less overwhelming and guilt making for other family members.
Name: Cecelia Barton
Location: New York
Time: 01:17 PM
I have been caring for persons with AD for many years. My grand father lived for about nine years with the disease. Although he was never diagnosed or treated, I recognize the same symptoms in the people I now care for.
I have used communication to influence people's outlook concerning AD sufferers. I find that there can be severe personality changes in people with AD. Family members and friends may become offended at comments and behavior patterns they would not expect from a person that they may have known a long time. Healthy discussions with loved ones help tremendously in fostering understanding about AD so that they would not look at personality changes as personal attacks. It would be helpful in keeping family members and friends involved in their lives and be the familiar faces that is crucial for AD sufferers.
Also, keeping relevant personnel up to date with the sufferer's progression of the disease would eliminate much of the shock associated with the inevitable changes that sometimes occur in rapid succession.
Much of the fear and disassociation that younger and healthier people generally feel is owing to a lack of knowledge and sensitivity to people with the disease. I keep journals and do progress reports that I give to the responsible parties. I usually do not embellish the facts, but I make it sound manageable and always add recommendations about what 'we all' can do to improve the quality of life of a loved one with AD.
Time: 02:06 PM
I ask. But I have to say asking for help has been the hardest of many adjustments for me over the last 3 years since my husband's stroke at 49 years old. You need to be specific about what you need help with and try not to be hurt when you are turned down. I don't have any family close by and I'm trying to hold down a part-time job, so I need to rely on friends to do so many of the things my husband used to. It is hard to stay connected socially so that I don't feel like the only time I talk to friends is when I need their help. I long for someone to call and say, "I was putting my window screens up today and thought of you. Could I help get your screens on?" Guilt of imposing on other's time keeps me from asking for much help. Lately I've been trying to combine the tasks with social time. For instance, I'll invite a couple for dinner and ask if they'll come early enough to help me move some furniture, etc. That way I get a bit of a social life, in comfortable surroundings for my husband, and I'm paying back my helpers with dinner. I've tried to organize a "girls go out and guys order food in", but it seems the guys are always busy or un-interested in spending much time with my husband unless it is as couples. Mobility is somewhat of an issue, but socializing isn't, so I'm not sure why the issue. I guess guys just don't make thier own social plans, or think ahead at how they could help.
Name: Kathy Ruffner-Linn
Location: Raleigh, NC
Time: 03:33 PM
I feel strongly that caregiving contributions can be made "from a distance" and need not fall only on the adult-child closest in proximity to the elderly parent.
I am the primary caregiver-manager for my parents; one has mild dementia, and the other - a chronic lung problem requiring oxygen 24/7. We are fortunate to be able to hire some help with hands-on care since I have health problems myself.
My sister (and only sibling) lives here in town, but she works a full-time, 8-to-6 job and she is not able to drive. My husband and I discussed and agreed on the decision that I stop my outside job and be the primary caregiver.
My sister contributes by doing Internet research and seeking out resources for our parents. She can do some of this at work or from her home, and we communicate often by phone and e-mail. It is a valuable and much needed contribution. I discuss problematic situations with her and get her ideas for solutions. She also lends an ear when I need to "vent"!
My sister and I go over to our parents' home for Sunday brunch as a family (sometimes just our "original family", sometimes with the son-in-law and college-age grandson!). This is a good anchor for all of us.
My husband has two sisters that live close to his mother (4 states away), so they have most of the hands-on responsibilities. I encourage my husband to "help" by keeping in touch with his mom by phone, and with his sisters by phone and e-mail. He knows it is important to let them know that he understands and appreciates the job they are doing, since he cannot be there. He lets them know that if he is needed, they can count on him to get there.
Open communication between family members is the best way to let everyone help!
Time: 05:49 PM
Only sibling brother does not help and hoards moms money so my savings is gone to care for mom thus cannot hire help or respite...I am a public health grad student doing a research project on how govt public can help.
If anyone wants to do my survey . plus no help from friends or church in 17 months.
Location: SF Bay Area
Time: 10:00 PM
Right now my younger brother has moved in to help me. My husband has Secondary Progressive MS and is worsening a lot right now. My brother wheels my husband in and out of the house, helps him w/his PT exercises, and does general household stuff.
Name: Dennis Recenes
Location: Port Richey Florida
Time: 05:51 PM
I usually handle everything by myself. My daughter is the only other person that visits her in the rehab center. I am usually there many hours after work to change her and to pick up where the nurses do not do. I encourage many to call her. The hardest thing confronting her(she is an amputee with bedsores that are now healing, and intensive pain, and coming down from all the pain medicine she had in the hospital and is detoxing)is that her son does not call nor visit and she babied him when he lived with us. Psychologically she is really messed up. At times I find myself overwhelmed and I crash for a day. Her side of the family gives minimum attention also. I am learning how to cope from articles like those that appear on this site and others. Thanks for all your help and God bless.
Location: imperial mo
Time: 05:31 PM
I have never received help from friends. It's just me and my two brother's taking care of our mom, and I'm the main caregiver.
Name: David Gillaspie
Time: 11:07 AM
I made caregiving for my father-in-law look easy. Anyone who has cared for someone in the advance stages of Parkinson's, along with their cancer and dementia, knows the score. I was in a place where professional caregivers couldn't help, where their suggestions were to keep my loved one in bed. The sort of help I got happened after I did the work. Sort of moral support. Living with wife and kids and mother-in-law under one roof was a delicate balance. My wife is a doctor spending the day with her patients. My kids are high schoolers full of that youthful enthusiasm. My mother-in-law is in her late seventies. Any of them were susceptible to additional stress. Since my father-in-law was beyond the professionals' scope of care, he and I worked it out like teammates in a big game. I broke out every sports cliche ever uttered and we took caregiving to a "whole other level." Then I told him, "it is what it is" and we'll take "each day as it comes." I channeled Howard Cosell direct from his Monday Night Football games.
Name: Donna & John Korzinek
Time: 08:12 AM
We are hundreds of miles away from family and old friends .The
exception is one family moved up here 2 years before we did. Their children are all grown with families if their own ,they do have a daughter and her family who stayed here in PA. My husband went to school with our friend and I fast became friends with his wife when we lived in own home state. They are our family now and their daughter watches my mother so we can go out to
dinner our wherever we'd like, and it is really great of J & K as they have a business to run and two teenage girls and yet they have time for
us. If anyone is family it is D,J and their children, who all of a sudden are not 2 and 6 anymore but in their 40's with families of their own and D and J
share them with us, and are of best chosen family.
Name: Celeste Harrington
Time: 06:58 AM
No one helps me. My husband is 81, he has the disease. I also am legal guardian to a schizophrenic man who lives with us. I run this house, pay bills, take them to doctors, have several pets I take care of.
I just joined AA because I was up to a bottle and a half of wine every night. I then went up to two packs of cigarettes and quit 7 months ago.
I have a sister who says "you feel sorry for yourself".
People say, oh you poor thing. But that's about it. I've heard I need respite, but where on earth do I get it? And how much does it cost?
Name: Debbie Rienecker
Location: Queens New York
Time: 01:45 PM
When I need help, I ask for something specific, that is not complicated, but usually explain why I need it. The explanation prompts the other person to question how I manage by myself, and I tell them that many others have it much worse than us.....it really does encourages them to help. I have found that most people do have their own baggage, and don't really want the details of how hard it is.....I don't know......maybe the details make them feel guilty that they don't do more. As hard as it is....remain upbeat....people respond better to a positive attitude.
Name: Ronald Barth
Location: Newhall, CA
Time: 09:19 PM
My wife has dementia. In the early stages, she offended most of her children and grand children. I am her second husband. I think most of them do not care. My wife doesn't receive Mother's day cards, Birthday cards, or Christmas cards. It very sad. I really do not want to waste my time asking for help.
Location: Dallas, TX
Time: 07:09 PM
My brother visits from out of state once in the summer and once each winter around the holidays. I started a couple of years ago picking one evening after a holiday dinner to have a "family meeting." That is where we talk at least once a year about mom's finances. Throughout the year, I send emails every time I take mom to the doctor, just recapping if there is no changes, changes in medicine, or whatever. That way my brother knows how often I am called on to do things. Then when I ask him to visit to help out, I think he finds it easier to say yes. I think it also helps him be connected.