I'm losing myself, being a caregiver.

16 answers | Last updated: Oct 15, 2016
863needshelp asked...

I know I am paying a heavy price, physically, for 24/7 caregiving, but I am truly beginning to worry about my mental state. After I've repeated the same thing every 10 minutes day in and day out, I feel like my brain is certainly not being stimulated at all. I do read but not to truly comprehend - just as an outlet. It's been suggested that I join some caregiver groups but, honestly, when/if I get a few hours to myself, the last thing I want to do is go to a meeting about it! (Mom has Alzheimer's). I feel so trapped in my body, mind and spirit by this caregiving and I know that I can face at least 5 - 10 years more of it. How do other people handle the feeling that you are losing themselves mentally in this caregiving ritual?

Expert Answers

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

I sympathize and empathize with you as a caregiver for an Alzheimer's love one. You're correct, it does extract a heavy price. Your question about how to handle the 24/7 demands of caregiving and the prospect of many more years to come is excellent and one that is frequently asked.

The answer is you can't survive being the sole caregiver on a continuous basis with 24/7 demands. Unfortunately, statistics bear out that statement with caregivers in over 60% of cases becoming ill from the incessant demands made upon them. In about 40% of those cases, the person providing the care predeceased the patient for whom they were caring. That's not a good outcome.

While I respect and applaud your commitment to caring for your mom, especially with her Alzheimer's issues, you must understand that your obligation regarding your physical, emotional, and spiritual health is to yourself, and if apropos, to your spouse and other members of your family living under your roof.

If your mother were able to clearly communicate her wishes and feelings about your dedication to her, I'm fairly certain that she would say to you that while what you're doing for her is commendable and appreciated, you deserve to have and enjoy a life. And that's the answer to your question.

Allow me to make a few suggestions that will not only enhance your life and mental state, but may enrich your mother's life as well. You need personal time, every week, perhaps a few hours once or twice a week, plus a "day off" to do whatever it is you wish to do "“ meet friends, attend church, go to a movie or have your hair done. Down time is necessary for you to be able to cope with the pressure of being a full time care provider.

To do this, if you have sufficient funds, you can contact a home health care agency and arrange to have someone come in for their required minimum number of hours to relieve you and care for your mom. Of course, no one does that as well as you do, but you and your mom will benefit from the change. If you're finding that your mother's demands are denying you sleep and require nighttime duties, you must get help, because your health is in jeopardy if you continue to push yourself without sleep. Home health companies can help.

Contact the Alzheimer's Association in your area and talk with one of their social workers about your concerns. Be open and honest about your situation and ask them what resources are available to you. The Council on Aging may also be a resource for you to check.

In many communities there are adult daycare facilities that work with and care for Alzheimer's patients for several hours during the week. If you can find such a facility and you can drive your mother to their location, you'll find that they care for patients just like you mom. They often provide meals, dispense medicines and most importantly, they provide socialization to your mother while allowing you a much needed break away from her. There may even be financial assistance available to subsidize the cost to have your mother spend several hours there one or two days a week.

Another source of relief for you may be your immediate family in the area. Sisters or brothers, even older, responsible grandchildren can fill in for you during the day to visit and care for your mother while you take time to take care of yourself, even if it's just for 2-3 hours. It's important for you to do it.

Rather than worry about the next 5-10 years and the increasing demands that caring for your mother will make upon you, take the time now to find out how to create a support system and regularly scheduled time away from mom.

I strongly recommend that you take one of your upcoming "days off" and attend an Alzheimer's support group meeting. The people who will be there are just like you, and they may have already found the necessary answers to the exact problems you currently face. They will gladly give you the information that may not only make you a better caregiver, but will definitely save your sanity and could save your life.

Community Answers

Campines answered...

I am going into the ninth year as caregiver for my husband..I attend a support group that has been very helpful and also provided laughs and friendship.

I have just contacted an elder care attorney who is working to get my husband placed in a SNF. This might be an answer for you also. I finally have reached the point of saturation and need to have some normalcy to my life.

It took a long time to come to this point without guilt but with the advice of family, church and friends .....I am there

Lmartin answered...

When my aunt was in the middle stages she lived in a 55 and older independent (sort of) apartment. I would take her out for the day and when I brought her home and would go to my car to leave I would be totally worn out! I could barely drive home. I can't imagine what you are going through day after day 24/7. You have to take care of yourself. This may be the time to look at places that take care of alzhimers patients. Your mother would never want you to totally give up your life to care for her. Of course you must spend time with her...take her out for the day for as long as she can do that. My aunt & I would go look at houses. WE both loved it. At the end of the day she would say "Linda I don't know where we have been but I know I had a good day!" That was great for both of us. I would be refreshed for out next trip and she would be waiting and ready to go.

Doro answered...

You do not owe your mother your life and your life is what it may cost you if you do not get a break. My cousin cared for her husband in the same situation until she had a heart attack and died at the age of 56. Her husband was then placed in a care facility with no one to visit or check up on him. Please look into help now. You need it and so does your mother. She may not be happy about interacting with "strangers" but she probably will enjoy her outings after the first few.

Tklaiber answered...

I also am beginning to feel the hardship of care giving. And I still am able to come home at night - it is my sanctuary. So far no sun downing. I attend a support group once a month - the tips are so helpful but yes there are times when it brings me down further to know what is yet to come. I am blessed that I have a husband that is extremely supportive. My mother is so argumentative - every minor thing can be a battle if the wrong word is said. It is exhaustive.

And just to vent - well meaning person say "I hope your mother gets better soon" Pleassse! It is not going to get better until God takes over.

A fellow caregiver answered...

The answer to your problem is adult day care. There is no need to feel guilty for needing time to yourself. Adult day cares provide a safe and homelike environment. There is health care supervision, therapeutic programming, meals and socialization available at medical adult day cares and most of all, they provide respite for the caregiver. At adult day cares like Active Day http://www.activeday.com you can choose the number of days a week you want your mom to attend and often it is covered by Medicaid and some long term care insurance. They even pick her up and bring her home so that you can work, run errands or just relax and spend some time taking care of your needs.

Carol p answered...

I am facing the same thing and I know I need some time for ME. I am the daughter-in-law doing 24/7 care for my mother-in-law. She has six children and I am not one of them. None of the children provide me with any assistance. So after reading this recommendation, I will take time for me at least once a week. The family just doesn't GET IT! Do I sound angry, you bet I'm angry. Some families just don't care. I only pray that when they need help their children won't be like their role models.

Wilkersond answered...

I keep trying to make time for myself. Very difficult as a caregiver, especially when other family memebers dont care or pitch in. They call every two weeks to check in for 5 minutes. (Sad) My kids are there to help but its a full time job in addition to working 40 hrs plus a week.

Make appointments for yourself and stick to them. Go get a new hairdo, walk in the park, massage, or I go in the garage and clean my car, time alone to re gather is what we need to maintain.

When I think I am loosing it I ask God for my health and strength to go on.

Meadowview answered...

This sounds so familiar. I am the sole caregiver for my 69 year old husband who is in excellent physical health but has entered the severe stage of his Alzheimer's. I am trapped. He will not allow a caregiver into the home and refuses to attend our local senior day care. Three doctors have told me to place him into an assisted living facility. I have found the perfect place, if such there is. While very expensive, I can pay but they will only take him if he is a willing house member and I cannot guarantee that. The next facility is huge and I am concerned he will be lost in the shuffle. We have tried a number of medications and are currently having success with depakote sprinkles which seems to be controlling his anger to a degree -- all others have rendered him virtually comatose. I have run out of activities to keep him stimulated and busy. He needs to walk at least three miles a day and if I am in the shower he will simply take off. The local sheriff's department provided us with a GPS tracker but several months ago he threatened the deputy when he came to change the battery and I no longer have that comfort. I cannot attend meetings because I cannot leave him alone. Fortunately he sleeps through the night. How do you get an unwilling partner into assisted living? And keep them there? I cannot appeal to him on my own behalf; this kind, generous, funny man no longer sees beyond his own comfort and has no desire to consider what this is doing to me. Obviously this isn't an answer but yet another "vent".

Loving nana-northern california answered...

Find a dementia care unit in an assisted care facility. I got help from this website. I know my husband is in good hands, he is 1 of 7 who live in this "villa". The caregiver ratio in this unit is quite good as they always have 3 people to take care of the 7. He hasn't fallen or gotten hurt in a long time so I know he is in good hands, I visit daily at all different times of the day so I have seen all the caregivers and they do a good job. I had 5 years of 24/7 and feel since he has been gone, I am really more upset as when I visit I leave crying because he is so angry and hates not being home. I know in my heart it is the right thing and we can afford the care thenks to long term care. I am 62 and feel my own body is worn out from the long time of caring for him, I have a torn rotator cuff from lifting him and severe back problems. I am now on narcotics for all the pain caused by the care. Do it if you can afford it---right away. You will not end your guilt or worry, but your physical body will be in much better shape. Nana

Annmartin answered...

I have had my 84-year-old mother with Alzheimer's living with me for almost 5 years, I am the only one here (siblings all live in other states). Please get as much help as you can -- that's the only thing (besides the grace of God) that has kept me sane. Try to find a support group -- I can relate to not wanting to hear/talk about Alzheimer's during your "off" time, as some months I don't really want to go -- but I do because I know I will feel better. It really does help to hear others talk about the same issues that you are having, and to have that outlet to vent. The only people who truly understand your feelings and frustrations are those who have been/are going through it. Get respite for yourself whenever/however you can. I recently hired a Geriatric Care Manager to help me navigate my way through the rest of this journey with Mom and I can't tell you how much it has helped to have that resource. Try every way you can to take care of yourself, and to make sure that you have at least some of the things that give YOUR life quality. God bless and stay strong. We WILL get through this!

Cool answered...

MY advice is go to a support group meeting you have no idea how much that helps I have not been able to attend the lat two meetings and I miss that so much these poeple are all in the same boat right now or have bean you can lern a lot and you even will have some good laughs wich i miss most days I am very luky my husband is eazy going and dos not get mad he allways says you know what to do and dos not argue I have learned when I get get frustraited to chanse the subject that works allmost every time so pleas go to a support group and lock the doors if you have to but take care of your self first you are no help to him if you get sick so please stay well and take care of your self the best to you

Samgopinathan-cfcss answered...

While you have all the right intentions, it is humanly impossible to be the son and the caregiver, have your own family, have a career and have a life. There is just one of you and you can do only so much.

Don't Try to do Everything Yourself. Caregiving can be very draining emotionally. If you invest your energy 100% in to providing care, you are risking a burn out yourself and also risking your health. Get professional help to help cover at least some parts of the caregiving requirements, if not all.

Do Not Punish yourself with Guilt. I have seen many family caregivers suffering from a wrong sense of guilt. Guilt that is totally misplaced. There is no need to feel guilty in bringing in help. It does not make you any less as a son. It shows maturity and responsibility

Support Group Enroll yourself in support groups. When you see how others are handling similar situations, that will strengthen your approach and enable you to face the situation better

I hope this helps Regards Sam www.homecareconsultations.com

4mymother answered...

It sounded like I had written the first few lines of your post. I, too, feel like I'm getting brain dead at times but I keep pressing on. I rarely get time away. Mom cannot communicate so it's like living in a house by yourself and cannot get out. What keeps me going is my faith in God and knowing that I'm doing the right thing by caring for Mom and that He will take care of me. Have a personal relationship with Jesus is what gives me strenght. I think the hard part is not knowing how long I will have this responsibility and when it's gone, WHO WILL I BE?

Jeanie jk answered...

Im a care giver, I started working for this family 5 years ago. At frist it was fine about 40 to 30 hours a week. Then things went down hill fast the only daughter who is in charge. Stopped helping like she was. And know I have Sandy 100 hours a week.Its more than I can take, really no sleep most nights and I feel Im losing it. Her family says they wont help anymore. They just want her fo go to Home. Its my income and I love her know. So I keep doing it so they wont put her in home.I need to have some realy advice Im so tiered and feel like doing nothing the few hours I do not have her its a bad place to be in.They never want to hire more help. Because she is to lazy to write out another check for some one elese to help. What to do I realy think the daughter is not all thier and this has be cofirmed by the other childern, but they are men and not willing to help at all.Im sorry for dumping this on ya all. This year and last they did not even want thier Mother on hoildays. So we tryed to make it nice for her but she cried because she still knows. Many times she says they just dont want me any more.:( So we try really hard to cheer her up.I struggle because they just expect me to do it. Give up my hoildays and never even offer to pay extra or anything.Am I wrong or is this the way families are. It seems from what ive read on here thier are some who really care about thier familes and others caring for them.Really worn out in Indy

Mmj answered...

Does she have Alzheimers, another ailment, or just frail? Does she have sufficient funds, or is the family using a Power of Attorney to pay for her care and help themselves to her savings. Perhaps they even had her sign over the house. This happened to a neighbor of mine. When we told him he no longer owned his house, he had no fight left, and just died. Perhaps she needs a legal guardian who is not related to her, In some areas of the country, there is a social services/District Attorneys office department which deals with elder abuse/neglect. You can voice your concerns to them, and have them keep your name out of it. Someone would come to the house and interview her, to see what she (not her relatives) wants, and what her real financial situation is. They can appoint a legal guardian who can see that her wishes are followed. A legal guardian can also use this womans' money to hire another caregiver to give you a break. Perhaps you can also get overtime pay for all the unreimbursed hours you worked.