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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 - 03/13/12

When you've been a caregiver for a dozen years and your own health is now precarious, how do you continue to care for your loved one?  I started this strong and healthy and, 12 years later, I am frailer than my 92-year-old mother.
 
Diane

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Name: Lucy
Location: USA
Date: 10/23/2012
Time: 07:59 AM

Comments

Good question. I've been at this for 14 years now--primary caregiver for a parent with dementia and multiple physical disabilities. I'm also a working single mother--that sandwich generation. I really don't know a solution. Every nursing home I've been in is a disaster--would NOT leave my loved one there. There may be a decent one somewhere, but I haven't found it yet. Hiring help is nice if you can afford it, but unfortunately, I can't. I have a little help from a sibling, but not much. Maybe attitude makes a difference. Maybe we're strong because we have to be. Maybe we're invincible.


Name: Dottie
Location: Mass.
Date: 10/22/2012
Time: 04:42 PM

Comments

I know how you feel as I am in my 11th year as a caregiver! Bob had a massive stroke and is paralyzed on his Right side and in a wheelchair. At 73 I'm not as able to transfer him as I was at 62. He is a big man over 200 lbs. and it is becoming more and more of a struggle every day. I have promised him I won't put him in a Nursing Home and I hope I am able to keep this promise!! I am just sooooo tired all the time


Name: Julia
Location: Rcihmond VA.
Date: 10/22/2012
Time: 10:08 AM

Comments

I think that it is time to think about having your loved one admitted to an assisted living facility. I had to do this with my mother, who has Alzheimer's disease. It was the most difficult thing that I have ever had to do in my life. But, it was best for me and my mother. I am now able to sleep for the first time in many years. My somach is not tied up in knots the way it used to be. I no longer feel like I am on a treadmill all the time. And even thought I do feel guilty from time to time, I am more contented and happier. As for my mother, she still wishes that she was with me, but she is stronger and more mobile thanks to the physical therapy she has received. Her Alzheimer's is slowly progressing, but I can see that she also has times when she is happier. She has gone on short days trips, and I also take her out to eat at times. I am more relaxed during our times together, and I am able to appreciate her more and just spend time loving on her. I visit her about 4 times a week to make sure things are going well, and for the most part, I think she gets good care. You must take care of youself, so that you can be around to still support your loved. You will still be taking care of your loved on, but just in another place. God bless you.


Name: Steve Wilson
Location: Pensacola, FL
Date: 10/22/2012
Time: 08:55 AM

Comments

Have been caring for my wife for 10 years. Part of the reason for retiring. Sometimes, it gets overwhelming, but I do have times to get out and mow, trim, do some woodworking. Get to shop alone which is a mixed blessing. But, at this stage, pains for no explanable reason are popping up. Having thoughts about how long I have to live and who will care for her after I'm gone. Or, will I outlast her? What's my health going to be if I outlive her? She has Multiple Sclerosis, SLE Lupus and Sjogren's with a host of other problems that come along with all that. So, it is a constant monitoring unless she's napping. That's my time to escape. At the moment, I think I am physically stronger but am a bit concerned about my mental situation. Thanks for listening.


Name: earl austin
Location: missouri
Date: 10/21/2012
Time: 08:28 PM

Comments

I CANNOT get sick or hurt! PERIOD!!! My 50 year old wife is a paraplegic thanks to a 3 decade old battle with MS. Sure if I got hurt at work my insurance and their worker's comp would pay for my costs & caregiving for me, but who would pay for someone to care for her? What if I got in a car wreck? Or even had to go to the hospital for a few days or even something minor like a broken arm or leg? Until a few years ago I could put her in the local nursing home for a few days or few weeks until I got able to care for her, but now if I do that, she has to go in permanently if Medicare is to pay? In a way, she is better if I'm dead. Sure, she'll go to the nursing home, but with my insurance, 401k, IRA and other moneys at least she would get to live at home a little while longer...


Name: Lisa
Location: ohio
Date: 10/21/2012
Time: 07:49 PM

Comments

I have helped people as a hired caregiver to help take some of the load off,for as long as i was needed.I felt I was part of a team that was helping make a huge difference for the family shouldering the burden.There were always co-ordinated teams of people,and I took care of myself,while helping the family take care of themselves.It's a balancing act for everyone involved...then i got cancer,recovered,and one family hired me back.It's a balance of give and take...i accepted alot of help during my illness and have learned to muddle through and not try to make things perfect,and enjoy the calm periods,because I've seen how easily it all gets crazy with heaslth problems.I'm handling tat kind of thing better and better.I was in a support group to help me with problems in my earlier life,and the lessons on selfcare I learned there transfer to my church,volunteering an family!


Name: sj
Location: chicago
Date: 10/21/2012
Time: 07:09 PM

Comments

Unfortunately, it's easier said than done. i 've promised myself so many times that i am going to take time out once or twice a month. i have been caring for family members since 1996, some are deceased some are still living. i love my family. i believe this a God given gift. but i know i have some me time. i will make this promise to myself. YOU have to take CARE OF YOU. GOD BLESS ALL CARE GIVERS.


Name: Greg
Location: ST. Peterdberg Fl.
Date: 10/21/2012
Time: 02:54 PM

Comments

I am 84 yours old and i have been caring for my brother 0ver 12 years. You have to take time out. I have caregiver that comes in 7 days a week. When the caregiver arrives I go to the fitness center for one and half ours. Then i go and myself to icecream and pie. It has kept my sanity. Greg


Name: Holly
Location: KY
Date: 10/21/2012
Time: 02:33 PM

Comments

I am struggling with this too. Dad passed away three years ago. A year later my now x husband walked out. Oldest son is helpful when he can. One son in California and daughter helps when it works to her advantage. At present, I can be away from house for short periods, but thst isn't going to last forever. In three weeks I will begin attending care giver support group to see where I can tweek and improve situation for both if us (I hope).


Name: Barb
Location: CO
Date: 10/21/2012
Time: 01:39 PM

Comments

My comment is to both you and anonymous. What happens if something happens to YOU? What will your loved one do then? It is better to take care of yourself NOW so you can continue your caregiving duties. Call your Area Agency on Aging. They have programs for adults over 60. Many are very reasonable and in some cases donation only. Good luck!


Name: karen
Location: dunnellon, florida
Date: 10/21/2012
Time: 01:35 PM

Comments

Everyone tells me the same thing, taqke care of you first. Sorry but that seems nearly impossible. I have been my husband's caregiver now since his dementia diagnosis in 2006. Between taking care of his every need, gocery shopping, cleaning, laundry, yard work, 2 dogs & 1 goldfish I just don't have any time for myself or to take care of me. Only after he is in a facility and only if that happens will I be able to BREATH.


Name: Cristina
Location: Plantation, FL
Date: 10/21/2012
Time: 12:32 PM

Comments

Dear Anonymous, I can understand you, we have an aid that comes, and for 4 months I have aids coming that my husband wouldn't allow them in the room, so they came early so I could go and do what I have to do and run home to get him up, shower and dress they will make him breakfast while I was doing the rest, (He is a sleeper so that gave me freedom in the am) until we have to take him to the hospital and that was my chance to let the nurses and aids to what they have to do I was there all the time but I didn't do anything, and he realized that it was ok to have someone else do it. I found a new agency that has the best aids they serve Dade, Broward and Palm Beach Counties feel free to contact me if you want further information. God Bless you


Name: Diane
Location:
Date: 10/21/2012
Time: 10:37 AM

Comments

Thank you for your responses. I have paid caregivers that come in (after I had a stroke in 2008 from extreme stress and exhaustion) but there is great turnover in caregivers and it seems I am perpetually training someone new. My parents went through $150K of their life savings paying for caregivers for 4 years, and now with my father dead, my mother is on the state's care, but still at home. It's not just the physical exhaustion, it is the emotional exhaustion of dealing with someone whose needs feel greater to them than your own. Thank you for responding, and for understanding it's not always cut and dry. It's not always possible to take care of yourself first......in fact it is rarely possible to take care of myself first. But it's my goal.


Name: Dawn
Location: Oregon
Date: 10/21/2012
Time: 10:34 AM

Comments

for anonymous in FL: see if you can get some financial help from a state agency like Department of Human Services. Can you be "Unavailable" when your husband sends the caregiver to find you? Go get a massage, sit in a hot tub at a spa, go shopping for yourself--whatever gives you a break and nourishes you. Some people feel entitled to extraordinary service and you have to set boundaries for yourself or you will become depleted beyond being able to care for him. I am starting 5th year of caregiving for my bed-bound husband, and do take care of myself with help of a respite caregiver. For Diane: I agree with Kathy of NH: it's time to let go of being superwoman for 12 years. Get help. Put your beloved mom in a nursing home if you have to. Her life and your life are equally important and if you want to live longer and help her on her way out, reassess your priorities!


Name: Donna
Location: Minnesota
Date: 10/21/2012
Time: 08:52 AM

Comments

I'm a private caregiver. Families pay me themselves so there is no overhead which really helps with costs. All elderly people should be able to stay at home. They receive consistent, quality care which is important to the entire family. I get to know and work with their routine. The families are comfortable with me knowing their loved one is being well cared for. This takes a lot of stress off the family caregiver. High expense of an agency causes more stress than people realize. Just remember that like an agency there are good caregivers and bad caregivers in both areas. Getting the right person really helps the patient and the family. I am taking steps to help relieve some of the obstacles of the family member (who is usually the spouse or daughter)which will help the care-giving. The patient will usually out live the caregiver because it is all about the patient. No one thinks of the one giving the cares. Donna


Name: Pat Norton
Location: Port Saint Lucie, FL
Date: 10/21/2012
Time: 08:42 AM

Comments

I was the caregiver for my husband (of 49 years) for the seven years we fought (4 major surgeries) esophogeal cancer. In the last 7 months of his life, I also became caregiver for my older sister (who had no children) who was dealing with dementia. A few months of that time was my hell on earth! It has been almost 3 years for me as my sister's caregiver and with her in memory care, I am able to take vacation days. This gives me time to look forward to and then enjoy. I know this time off helps me to stay healthy.


Name: GAIL
Location: MIDWEST
Date: 10/21/2012
Time: 06:16 AM

Comments

ONCE YOU MAKE THE DECISION TO CARE FOR YOUR LOVED ONE, YOU HAVE THE OPPORTUNITY TO VIEW IT AS A PRIVILEGE TO ESCORT SOMEONE TO THEIR END. JUST LIKE A MOTHER WHO PUTS THEIR CHILDRENS' CARE BEFORE THEIR OWN, IT IS MORE OFTEN THAN NOT THE SAME ATTITUDE THAT CAREGIVERS TAKE IN THEIR CARE. THE WHOLE "PUT YOUR OXYGEN MASK ON BEFORE YOUR KIDS" IDEA SOUNDS SENSIBLE. BUT, IT IS NOT THE TYPE OF DECISION CAREGIVERS MAKE FOR A REASON. THE AMOUNT OF EMPATHY IT TAKES TO DO CAREGIVING DOES NOT LEND ITSELF TO PUTTING THEMSELVES BEFORE THEIR LOVED ONES. CAREGIVING IS NOT A NEW CONCEPT. IT HAS BEEN BEING DONE FOR THOUSANDS OF YEARS. WE HAVE A LEG UP WITH HOSPICES, HOME CONVENIENCES, BETTER HYGIENE PRODUCTS, AND BETTER MODES OF COMMUNICATION THAN ALL WHO HAVE GONE BEFORE US. WE CERTAINLY HAVE IT ALL OVER THOSE WHO HAVE GONE BEFORE US. THERE WILL ALWAYS BE A TOLL ON CAREGIVERS IN VARYING DEGREES. SHOOT FOR THAT DEGREE TO BE AS MINIMAL AS POSSIBLE. AND, PRAY.


Name: Vita Leach
Location: Manasquan, NJ
Date: 10/21/2012
Time: 05:41 AM

Comments

I see I am not the only one feeling the world on my shoulders. It is so difficult to keep a distance from one you have been with for 65 years and I am just now beginning to think more of myself. Thank you.


Name: Anonymous
Location: Florida
Date: 03/13/2012
Time: 06:00 PM

Comments

I know exactly how you feel. I have been caring for my husband for the last 4 years. Not a day goes by that someone doesn't say, "You must take care of yourself first" I might swing at the next person who says that. They most often have not yet experienced a loved one needing constant care. We do have family help and paid help but I am still exhausted. I have invested 60 years of my life raising a good family and always being there for my husband. That is a hard bond to break and one that I personally cannot forsake. Paid help is very expensive and our bank account is rapidly shrinking. My husband will not ask the hired caregivers for help, he asks them to get me and will only accept directions from me. A nursing home is out of the question. They are more than twice the price of home healthcare givers and I would end up staying with him there to be sure he is getting the right care. Do look into hiring a health care agency if you have the financial resourses to do so.


Name: Roxanna
Location: Champaign, IL
Date: 03/13/2012
Time: 06:47 AM

Comments

THAT IS WHY AS A CAREGIVER ADVISOR I ALWAYS TELL THE CAREGIVER TAKING CARE OF YOURSELF IS PRIORITY 1. YOU MUST BE IN GOOD SHAPE FOR THE PERSON YOU ARE CARING FOR.


Name: Kathy
Location: NH
Date: 03/13/2012
Time: 04:35 AM

Comments

You don't!!! Almost always comes the time when the health and well being of the caregiver is more precarious than the one being cared for. I heard this over and over while helping to care for my Dad who had Alzheimers for 11 years. I didn't really believe it until it happened to us. This came at 10 years for my mom who had been my Dad's caregiver. Dad had a small emergency situation that I usually would load him and Mom up in the car and take him to the VA. Dad had never been a pt. in a hospital and told us he never intended to be. I stepped in and made the decision (keeping Mom in the loop)that she could no longer do it, even with my help. I called an ambulance (something he never wanted me to do) they did admit him to the hospital for the infection in his joint and from there he went into a nursing home. We were still caregivers and she still was there every single day but at least I knew he was getting care and she was getting much needed rest. I have to believe your loved one would not want your health to suffer in the process of caregiving. Best wishes to you!



 







 

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