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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 02/26/13

I am emotionally spent caring for my mom with mild to moderate Alzheimer’s, dealing with my recently deceased dad's estate, family conflict and, most of all, the ongoing task of finding good help. Since my dad became ill three years ago, we have been through 11 home health aides, private hire and through agencies. My dilemma is that most think this is a TV watching job. I am at my mom's house two days per week to offset expenses and my sister is there on weekends. Watching my mom decline is heart wrenching. Any advice?
 
Hanging by a Thread

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Name: Andria Harris, Prof. CareGiver, CNA, RCFE Administration
Location: Los Angeles, CA
Date: 03/31/2013
Time: 04:35 AM

Comments

Hi There, My advice to you is that you may, make a list of the most important things that concerns your mother that you wish the caregivers should pay attention to, this includes a care plan. Hire only professional caregivers who understand the disease as well as the concerns of you and your family. Get in touch with your local ALZ. Association. During an interview with prospective caregivers, make sure that they understand the desires of you and your family, before you hire them. My best wishes to you and your family Andria Harris.


Name: Jean, PA-C, MPH, Gerontologist
Location: San Diego, CA
Date: 03/29/2013
Time: 08:22 AM

Comments

Hello, my advice to you is to read all these wonderful comments and extract the essence of what all these experienced, professional responders are telling you. There is a lot of HELP out there for people in your situation. If you don't have time to do compound the essential of all these messages, re-read the comment by Linda, MS on 03-11. Simple, eloquent and a solid road map for you to follow. Add Prayer to it all and you'll be just fine...


Name: Shelly Mcconnell
Location: Fort Bragg, CA
Date: 03/28/2013
Time: 09:24 AM

Comments

Dear Hanging, The first thing I would do is to contact an agency and have a very clear idea of what you need to make your mother safe and her needs met. As a supervisor for an in Home Care Agency, I found it to be very helpful for the client's family as well as the caregiver to have a Plan of Care in place. This plan covers both the personal care aspect as well as the home care. I have created a daily check off sheet that can be viewed by the family members to confirm that the client is being well cared for and the household chores are being completed. If necessary this plan can be set up for A.M. and P.M. if care is provided at these times. I also perform unscheduled visits to check on the client, and visit with the family members at least 3 times a year. I hope this helps.


Name: Teresa Borden
Location: Decatur, Alabama
Date: 03/11/2013
Time: 05:32 PM

Comments

Been there, done that. Trite but true. Fortunately we ended up with one of God's Angels for help. Don't give up, keep looking and praying. It is a heartbreaking disease. Please try to cherish every single moment. You'll never regret the time you have together, but try to work out a sharing schedule so you have some fun time to take care of yourself tho. Let us know where you are. Maybe you can find someone, like me, who would be happy to pitch in! You need relief. If you are near me, I volunteer!


Name: Rosemary Porter
Location: Bethel, AK
Date: 03/11/2013
Time: 10:29 AM

Comments

While it is true that some hired caregivers see the job as you say "watching TV." Many people hire caregivers and expect that for minimum wage they will also do the house cleaning, laundry and cooking. Often sitting close to Alzheimer's patient, holding a hand or yes, watching TV is comforting and part of the job. If you want a full house servant hire one. Finding good people for all jobs is not easy. You must tell them what you expect and if you want more - go to the next level and pay for what you expect.


Name: Lesley Vestrich
Location: Stuart Florida
Date: 03/11/2013
Time: 09:47 AM

Comments

I am also a caregiver for Mom with Alzheimer's and I kissed a lot of toads before I found the prince-the right caregiver for my Mom. I started out with just 3 hours a day then up to 6 hours then 8 hours then 10 hours and I did the night shift. I know how hard it is watching this awful disease take her away bit by bit . I have recently placed Mom in an assisted living community in memory care. At first I got so depressed and yes a little guilty but it has turned out to be such a blessing. She is having the best time. She has friends as she puts it "just like her". She is engaged. She participates in many activities. She is smiling most of the time. I am so relieved! Adult Day Care is an option but so is assisted living memory care.


Name: Dianne Johnson
Location: 601 Ohio Street, Pine Bluff,AR.
Date: 03/11/2013
Time: 09:25 AM

Comments

I can relate to what you are saying. My mom was dignosis with AD three years ago. My brother moved back to help out. I am blessed that my Mother comes to my adult day care center everyday with me. I keep her every other weekend to give my brother a break. She doesn't want to leave her home.Just try to get some help . Adult daycare centersare good for you and for your love.


Name: Linda...MS, LPC
Location:
Date: 03/11/2013
Time: 08:49 AM

Comments

As a Gerontologist who has worked with families taking care of an older adult I can tell you that it's not going to get easier. You have options, and that's a good thing. 1. Caregiver support groups are wonderful. I lead a support group for caregivers now and I've seen changes that have helped these people learn how to "care for themselves." 2. Assisted Living Facilities either private pay or medicaid assisted. There are people out there who can help you with the medicaid part. 3. Education... you cannot learn enough about your mom and dementia. Support groups help; local area on aging programs; Alzheimer's Assn (you can find info online); Clergy. I have seen many caregivers become ill and die before their loved one. I hope this information has been of some help to you.


Name: Joy Hunt
Location: Sacramento, CA
Date: 03/11/2013
Time: 08:37 AM

Comments

Dear Hanging, Caring for a family member is very hard. I have been caring for both family and pay clinets for over 25 years. One major fact to remember is: this must be a family affair. Outside help must be screened totally and you will need to make suprise drop-in visits. At some point you will need to turn over total care to outsiders. Yes it is heart breaking to lose the person your Mom was and learn to embrace who she has become. Good luck and God's Blessings to you and your family


Name: karen
Location: fl
Date: 03/10/2013
Time: 05:27 PM

Comments

GET HELP I can't say it any clearer. It is of upmost imporatance. You can NOT do this alone. Whatever it takes - GET HELP


Name: Marianne Weber
Location: Prattville AL
Date: 03/10/2013
Time: 05:00 PM

Comments

You are a dutiful daughter, but since your mother's assets are depleted, as is your health and sanity, I suggest going ahead and placing Mom in a facility with Medicaid. You spend the remainder of the time you have with her as a loving daughter, visiting often, but getting on with whatever life you have left. You do not have to be a martyr unless you choose. Choose to live and let your Mom live, though it does not have to be with your 24/7 care.


Name: Anna Marie
Location: Buckeye, Arizona
Date: 03/10/2013
Time: 11:22 AM

Comments

I have witnessed your situation so many times. Family members hiring independent caregivers and coping with the issues can be difficult at best. I recommend utilizing a good agency which has a Care Coordinator in place. (Not a Care Guardian) In this way the continued support staff can be put in place for you along with evaluations and suggestions for the ongoing care of your family member. Many care coordinators are up-to-date on programs within your state which will help offset the financial burden, such as Arizona's Mercy Care Program which allows for state funded care hours (in-home) as well as supplying medical devices for the duration of your family members life. Checklists of chores, care needs, extra curricular activites, proper meal planning and errands are supplied to the caregivers per your wishes and those of you family member. Maintaining a care plan book is essential to this. Be sure to have your mom in on this in order to help maintian her sense of independence. The Care Coordinator is trained to match your personality and you family members personality with the right caregiver/companion aid personality, not just give you whoever is available. Make a list of likes, dislikes, idiosyncracies, habits, wants and needs (get mom's opinions in on this). Decide whether she requires attendant care or respite care, and review her medicare/medicaid policy, some allow for limited respite care, before any meeting.


Name: Felicia
Location: Detroit
Date: 03/10/2013
Time: 10:54 AM

Comments

Hello Veronica, You have had a lot to do. I have been with my parents since June of 2010. Yes, I had some bitterness. My siblings said that they had a life. I guess my life did not count. My mother was recently placed in Assisted Living. My father came home from a nursing home rehab medicare admit last Thursday. He was home less than 48 hours and had to be readmitted for facility acquired pneumonia. I am hoping to have funding next week to place in in an around the clock nursing facility for full time care. I am in physical therapy after all my mom needed. So I hope I can get my dad the team focused care that he neede. Just keep getting up every day and do your best. Love your mom the best you can. And keep going. Pray. God bless you.


Name: Liz
Location:
Date: 03/10/2013
Time: 10:21 AM

Comments

Thank you for exposing the issues with paid caregiving. it can be more stressful than family providing the care. The turnover for most long term care entities is tremendous. Unfortunately consumers are not aware until they are entrenched in the care process. My family had my mom in an assisted living facility, however we went there each day because there was so much turnover in staff, plus they charged extra for every little thing they provided. It was an extra $500 just to give her a few pills. talking about these issues is how we'll become more educated consumers.


Name: Cathy
Location: Brookline, MA
Date: 03/10/2013
Time: 10:20 AM

Comments

Caring for a loved one with Alzheimer's is not an easy job. I cared for my mother five years at home and oversaw her nursing home care for 6 years. It does take a toll on the caregiver - emotionaly, mentaly, physicaly and financially, However, I have no regrets that I choose to be her caregiver. However, I wouldn't have been able to cope without support groups and friends in the alzheimer's community. I was also a very well educated caregiver attending workshops and symposiums whenever I could. I didn't get much relief from my caregiving duties - but did send my mother to daycare two days a week and had help one afternoon a week. Once my mother went to a nursing home I found I still had to be with her several times a week to help with her feedings and provide her with some one on one attention. The biggest piece of advice is to get into a support group and take care of yourself! If you do find a great caregiver from outside tha family that is a bonus! Noone will take care of a mother, in my opinion, the way a loving daughter will. You have to approach the caregiving job with some humor to help you get through your days.


Name: patricia white
Location: phila
Date: 03/10/2013
Time: 10:18 AM

Comments

Hi, I am a private CNA who have taken care of a few family, My comment is for you to find a support group. That once a month meeting can keep you going, you will see other people who have the same problem. It a place where you can get great support and it worth it. If you can afford to pay a private person for a few hours you won't regret it. I sugguest this to all my family and I have see the different.


Name: Linda Germanetti
Location: Palm City, Florida
Date: 03/10/2013
Time: 09:53 AM

Comments

I agree with the person who suggested day care for your mom, dad or both. If you are now emotionally spent, it only gets worse and you will resent being a caregiver. Home care is very expensive but day care would be helpful to all of you. I don't know where you are located, but my mom is in a wonderful facility in Wellington, Florida if you need some information.


Name: Lisa
Location: Ohio
Date: 03/10/2013
Time: 09:30 AM

Comments

How to find things is a learned skill,and it should have been taught in school!So says What Color Is Your Parachute? author Richard Bolles.It is really a book on how to find things he says. This book is an annual,and pre 2006 0r so,and it's not really the same book,and 2013 is out.


Name: Susan Corey
Location: Southfield, Michigan
Date: 03/10/2013
Time: 08:57 AM

Comments

Dear Hanging by a Thread, I too, have been through a lot of caregivers. My father has dementia. I am running the show, just like you and your sister. I now work very closely with the agency providing care to my dad. I have written up "house rules" for the caregivers and explained to them what is expected. The cost of caregivers is extraordinary. Currently I am looking to sell his house and mine and buy a house with a separate in-law cottage if at all possible to bring down costs. I am also considering putting in security cameras. So sad. I now look at my role as my Dad's guardian. I cannot control his condition, I can choose how I respond. I have had to accept his condition and understand that his illness is perfecting unconditional love in me for others.The hardest lesson I have had to learn is that my wearing myself out is not helpful. Be careful. Force yourself to be good to you. I walk in your shoes and you in mine. Advice: Write up house rules and have the caregivers sign off. Have a caregiver with you on one of your days to help them understand what is expected. I understand the TV issue. I have had to accept part of that challenge and now have activities listed they can do with my Dad. I put my story on a website. If you are interested. caregiverstresshelp.com. Interview each caregiver before they begin -if you haven't already. Write notes/instructions and leave them in the house. Make a list of things that you need to do for yourself and do them! I did finally find a couple of core people that actually love taking care of my Dad. Don't give up! This is such a huge problem for the Country. I am working like mad to find better solutions. Let me know what best practices you come up with. There has to be a better way to take care of our aging parents. God bless you. Susan


Name: Allen S
Location: Saint Louis, Mo
Date: 03/10/2013
Time: 07:03 AM

Comments

Stay strong and remember that you are doing the right thing. I witnessed my wife care for her mother with Alzheimer's for over 5 years on a daily basis and empathize with what you are dealing with. I couldn't help but notice the revolving door of caregivers that you have experienced and I understand just how difficult that can be for you and your mom. I'm sure that you have already considered this, but I wanted to suggest having a care plan for the HHAs so they know exactly what is expected during their time with mom. Identify those things that will provide you the greatest amount of relief and bring your mom the most joy. Don't assume that the aide will know just what to do. My wife started a home care agency in St. Louis in honor of my mother-in-law to help families just like you. We remove any and all guess work by creating specific duties that are to be accomplished each day and also work with the family to create weekly and monthly goals that are to be accomplished. Can you imagine going to work and not having goals? I would also encourage you to reach out to your local Area Agency on Aging and asks who they recommend and provide a high level of customer service and client focus. Your experience with the "TV Watchers" is unacceptable. Keep the highest expectations for those individuals who provide care for your mom and accept nothing less than the best! Feel free to contact me for other suggestions, I would be more than willing to learn more about your situation and offer any practical tips or insights. Again, you are doing such a wonderful thing for your mom! Allen Serfas Assistance Home Care stlhomecare.com


Name: Sonia
Location: Arkansas
Date: 03/10/2013
Time: 06:00 AM

Comments

First of all "Bless you and your Sister" I moved in with my parents about 2 years ago. 5 years ago Dr said my Dad has Alzheimers. It was taking it's toll on my Mom. I also am a Caregiver for the elderly (most have Alzheimers) I love my job ! ! I hate what Alzheimers does to people.But I love being there for them and their family. I agree with the other comments. You must take care of yourself. Ask ask ask everyone and everywhere about programs in your area. My Dad was accepted into a State program. They pick him up and bring him home 3 days a week. He goes to a place called The Total Life Center. He gets physical therapy, fed meals, activities and all his medical needs are "FREE" This program has been a God sent. Now my Mom gets time for herself. They really stress that the caregiver take care of themselves. Knock on doors until you get your needs met. *** I wish you and your family the best ***


Name: Tonya Dallas
Location: Vancouver, Washington
Date: 03/10/2013
Time: 05:23 AM

Comments

I understand your frustrations! I previously lived in California and I worked as a lived-in caregiver, while earning my college degree.It was me and another lived-in caregiver. We both had a medical background and both had previously done caregiving. We both were hired, by the family members and not thru agencies. This is how we were hired: "Word of mouth!" That being said, check with local colleges and universities. Post signs (in the medical and allied health departments) and list a job description. Make sure the list includes CPR certification. Do not list salary, that will be for the actual interview. Make sure to indicate the medical problems of your love one(s) and their gender. I hope this helps, for a start. Since leaving California, I help family members develop job descriptions for their loved ones care. I also help, interviewing and training newly hired people. As for the TV, that can be addressed by "keeping the employee busy!" If your loved one wants to watch TV, like when I was caregiving, then make it count! The man I took care of "always" watched the morning news, with his breakfast and the evening news, with his dinner. Since my relief did not watch TV, we overlapped duties and eat with him. We not only eat and watched TV, we talked about ourselves, the news, etc. I am not sure where you live, but if you need additional information please email me at yankees4421@aol.com Please put Home Health Care in the subject line. Many Blessings, Tonya


Name: George R.
Location: Hollywood, Florida
Date: 03/10/2013
Time: 05:18 AM

Comments

Dear dedicated daughter; i have been in the nursing field for many years, working in hospitals, schools, jails, prisions and VA medical centers which i retired from...now Caregiver for one elderly gentleman with moderate dementia. my advice: removed anything of substantial value in the home, i.e. cash, bankbooks, credit cards etc. Call the references of the HHA and do background checks; use a 'nanny camera' and inform the caregiver of such. try to get leads from your church or synagogs, or doctors who are trustworthy; i am supervisor of FIVE caregivers, all of the caregivers, I work TWO days a week and check the Nursing Log, the Medication Record thoroughly; Have a work performance sheet for them to check off as they perform duties....i.e. bathing, oral care, meals, maintaining records etc. There are many good people out there who are trustworthy- connecting with them may be difficult. If you see a 'red flag' during interview, do not HIRE, trust that your instincts are coorect. I would only allow LIMITED ACCESS to TV; remember that your Mother has a disease, her actions and behavior is not her true self, think of the wonderful fun times you and your family had shared; i believe in the power of prayer- ask you higher power to send you the right person for assistance. my email is gtranger at att dot com if u think I can be of any further help to you. sincerely, george r.


Name: Maria
Location: Mystic ct
Date: 03/10/2013
Time: 05:12 AM

Comments

You are not alone, and you and your family need more support. Start with a call to your local Area Agency on Aging for help. They can advise you on the best resources in your area..perhaps a geriatric care manager consult will help, certainly you need more quality care in the home or at a facility ( adult day care or otherwise) and there are a variety of ways to pay for the care, whether reverse mortgage or utilizing other saved assets or perhaps your mom qualifies for a grant program or some state benefits. Your health is important and this may continue for years, so keep looking for the best solution and remember that solution may change over time based on your moms condition and your families ability to help her... Remember there is help available, keep searching because you deserve it, you need it. Wishing you the best.


Name: heddy
Location: ct
Date: 03/10/2013
Time: 04:53 AM

Comments

try visiting angels, they are a national company, and we've been very happy with them for the most part - the let you meet the caregiver behand .. rinnie - have you tried augmentative communication with your mom (he touches a picture of what she wants or wants to say and the program speaks for her) - I work with nonverbal kids with autism and these apps are a life safer - there are also inexpensive devices in the go-talk family that could help..


Name: Cecelia
Location: New York
Date: 03/10/2013
Time: 04:48 AM

Comments

As a caregiver I've seen this disease take a person from being active and alert to totally nonresponsive. The main thing for family and caregivers is attitude. When you have done all that is humanly possible, a positive attitude will focus on what still functions, rather than what's lost. Engage your mom in activities, memory exercises, anything that can stimulate, no matter how little it may seem. Keep a peaceful mind. Accept that life sometimes seems unreasonable. Having to manage so much at the same time is difficult, so make sure to get adequate rest and necessary help. Discuss your expectations with people you hire without micro-managing the job, which is counter productive. I'd rather not focus on the decline, because although our bodies have limitations and will fail, our spirits will always be alive and well - all of us!


Name: Ralph Bowers
Location: Newport, RI
Date: 03/10/2013
Time: 04:42 AM

Comments

We networked with Family, friends, state, private sources. Also found several others with like ailments to complete a circle of friendly care. Important to not give in to emotional tugs while maintaining professional-like atmosphere. Practice tough-love with self.


Name: Lori
Location: Boston, Ma
Date: 03/10/2013
Time: 04:26 AM

Comments

Adult day health. Less expensive than home health aides. They provide breakfast and lunch as well as social activities. They also have nurses and hha so showers and personal care can also be added. Perfect solution for respite for the family


Name: Veronica
Location: Baltimore, MD
Date: 03/06/2013
Time: 07:20 AM

Comments

Dear Tony, I can certainly relate to your cirmcumstances. Have you looked at a reverse mortgage to keep you in the home?


Name: Rinnie
Location: Martinsville, IN
Date: 02/27/2013
Time: 06:41 PM

Comments

I don't have a miracle answer nor can I pull the "rabbit out of the hat", but I can say, "What a wonderful daughter your parents raised". I lost my father to cancer 16 years ago. I was proud of my mother on how she attempted to do things for herself that she had never had to do because my father was a very thoughtful, loving and caring husband. Just little things like hanging a picture on the wall or learning how to check the oil in her car. She was doing so well, especially after having had a wonderful marriage of over 50 years stop abruptly. It was less than two years after my father's death that Mother had a massive stroke. At first the medical field told us that she wasn't going to live. Then a few days later it looked like she was going to make it, but that she would be a "vegetable"??? My strong mother proved them all wrong. She was in the extended care unit of the hospital for about 3 months. She had to learn EVERYTHING over. She didn't know how to sit up, blow her nose, or eat. Mother gave 110% in working with all her therapists (occupational, speech and physical). I took a leave of absence from my job for those three months and spent every day with her in her therapy sessions. I'm sure she got tired of me. We worked hard on our own by making things a game trying to help her learn to talk. I remember I was trying to help her with the letter "O". She couldn't say it, so I told her to yawn. As she exhailed, she realized that she was saying the letter "O". I couldn't change what had happened in "our" lives, but now I look back and I cherish those hours spent. Mother had her stroke the end of August and left the hosptial on December 4th. No, she NEVER got to go back to her home. Her whole life, as she knew it, was gone from the moment she had the stroke. My sister and I divided everything up in the house from furniture to a teaspoon in the kitchen drawer. We kept EVERYTHING that we could. Eventually we had to sell Mother's brand new house that she had lived in for less than a year. Mother's biggest loss was her health. She had lost 90% of her speech ( still can not espress a thought ) and lost the use of her right side. I'm always teasing her that we have played a game of "Charades" the last 14 years, just that I do all the guessing..ha! She has spent these years in a wheelchair with needing assistance in everything she does...but..her mind is good (declining a bit as she is now 91). I am so proud of her and how she has delt with life these years. She still has a "life". At first my sister and I were going to share Mothers care. Two week with my sister and two with me. We did this with altering the schedule now and then for two years. Then one day, unannounced, my brother-in-law drove up to the house with my mother in tears and a suitcase. I was now, without notice, Mother's full time caregiver, 24X7. I often wonder what would have happened if I hadn't been home that day. With sharing Mother's care I had gone back to working part time with the company I had been with. Needless to say I had to leave my job for good, with no notice. That was 12 years ago this last December. Mom and I are starting our 13th year together full time. We were on a list to receive some in-home care through a program with the State we live in, but over 5,000 people were ahead of us waiting in line too. After caring for my mother 6 years, every day, every night, 7 days a week, we made it to the top of the list for assistance in the home. The caregiving from the program has been hit and miss. Just as you have experienced not all "health aids" are compatible or dependable. I was lucky to get a few days relief a month. It hasn't been until this last July that the program has really started to help on a regular basis. It is saving ME...BUT I still haven't had a DAY OFF in a year when last my mother was in the hospital for a week, and that was no day off, being at the hospital. It isn't the first time I have gone a whole year without a day off either. I keep waiting to "hear from Oprah", ha! Do you think maybe someone put my name in for a FREE vacation ?????? I know that I'm not being of any encouragement, telling you the secret formula to making life easy or waving a majic wand and making it all go away or at least return to the life you had. The first nine or 10 years of Mom and I being together full time and not getting help, I did a lot of "WOE IS ME", ANGER. I was given no choice. Excuse the expression, but Mother was literally dumped on me. I was HATEFUL, JEALOUS, AND RESENTFUL..at my sister & her husband, who had taken the bulk of mother's assets, bought a 5th Wheel and hit the road. I WAS STUCK! Everyone else was going on with their lives. Travel, vacations, even the smaller things like just getting to go outside of these 4 walls and not having to wonder if Mother was needing me or if she was okay. I was ANGRY at this system. The government would pay in full Mom's expenses if I put her in a facility, but help us ??? NO. Every article I read said that the caregiver NEEDS to at least once a week go out for lunch with the girls, go to the gym, how about a movie??? I would be angry...HOW ! The person writing the article obviously wasn't a 24x7 caregiver with out any help. I still haven't the answers after all these years. I was in my 40's when I started caring for Mom and now I'm a "Senior Citizen". I still feel cheated at times when I see the world and "life" going by. I do "woe is me", but on a much lower scale. Over the years the stress I carried from the responsiblities or brought about because of my negative attitude caught up with me. I have developed debilitating health issues for which there is no cure. And as for the "future" not only are Mother's assets depleted but all of my "nickels" are gone too. Why don't I just put Mom in a facility? I certainly do not judge anyone who feels that a facility is best for their loved one and/or the rest of their family. We are all different and no person's circumstances are the same. The day may come that I must make that choice. For me, I hope not. For personal reasons, no matter how difficult is seems at times, how many "woe is me" I wallow in, I will continue to care for Mother as long as either her or my health allows. This DOES NOT make me righteous by any means. I have though, been able to calm my heart so much more these last few years by trying to keep in mind that our Heavenly Father knows our needs and as long as we do his will he will always provide. His hand has not been short towards Mother and I. I'm not new to my faith, but it sure has taken me many years to practice what I preach in leaving things in His care and then "leave it". I still have a tendency to pick it up again thinking that I have to carry it...Silly me. I truly hope that you find a program in your area that will work for both you and your mother. Perhaps other family members or friends may find they can help. The thing I want to leave you with from my experience is DON'T DO WHAT I DID for so many years. We can't make people do what we want them to...so we can't MAKE someone "step up to the plate" and help. Don't let yourself get comsumed with the "Woe is Me", Anger, Hatred, Jealousy and all the other distructive attributes. Life may not be what we want, but we do have someone to help us carry this load. HE will always be there to calm our hearts if we let him. Mommy and my days aren't always "roses" because neither one of us are healthy and we have our moods, but one thing I love is that when I put her to bed as night. When I tuck her in we always find something to laugh about. We give the hug and kiss and then remind each other of our love.


Name: Deborah
Location: Greensboro NC
Date: 02/26/2013
Time: 02:40 PM

Comments

It may be time for your family members to sit down and have a serious talk. Your mom may need another 7-10 years of care. The fact that you feel so distraught now is a warning sign that you all need more help. Maybe it's time to begin looking for an Adult Day Care Program as Bette suggested, or for a temporary respite program at an Assisted Living Facility to see how your mom and your family would do if she were moved there. Sometimes, when one or more family members is so stressed, it becomes increasingly difficult to handle patient caregiving. It may be better for everyone to place the person in a good care facility. Visits become more positive. On days when things aren't going well, you are able to make the time shorter and leave before emotions get too negative.
 
It really helped me to join a caregiver support group so I could talk with other people and find out I wasn't alone, learn from their suggestions and benefit from the incredible encouragement others offered me as we cared for my mother-in-law until she passed. The job of caring for someone with dementia is not easy in any way. The more help you have and support you get now, the better you will be when the caregiving time is over. I hope you are able to get to a support group soon, and find a way for you and your sister to share the caregiving with an outside agency or facility so you can get the time you need to live your own lives. That's what your mom would have wanted for you both.

 


Name: Vicki
Location: NC
Date: 02/26/2013
Time: 07:31 AM

Comments

This is something I went through with my mom until she passed away and now with my husband's father. My mother-in-law just passed away and we have help in place, but it is especially draining on my husband and his sister. Fortunately, we have a person involved during the day that is fantastic. However, at night, the person is getting paid well for sleeping.
 
We have to take it day by day. One of the things is making a place in the house that is completely ours. We can have a little bit of home where one can pass the baton to the other while getting some rest and away time. Believe me, it is not easy. I know from experience. Just know that you are not alone. Please take a little time for yourself if you can. God bless you for taking on this difficult circumstance. I just always try to remember, if I live long enough, it may be me being cared for.

 


Name: Bette
Location: Delaware County, PA
Date: 02/26/2013
Time: 06:58 AM

Comments

Check with your local Area Agency on Aging for Adult Day Care centers. They usually cost about the same per hour as home care, and would give him the chance to socialize while being in a setting where professionals can watch him and help him participate in activities. This way, you may only need aides for his bathing and a few other services.

 


 







 

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