How to keep from going crazy while caring for your mother & not having a life?

Sujean, my mil is similar to your mom n she is 80 with Alzheimer's. I cannot go to the bathroom no more than 15 minuets or she is wandering around hunting me down. She feels comforable around you n you r her security blanket. However, my mil is able to sleep in the room we fixed for her n we put night lights in hallway n leave on the bathroom light on at night so she can see her way around n not be so scared. Not sure if you done that if it would help. She also has an adjustable light in her room too n r room is right down a short hall too. Can u find out what is scarying her so that she will feel comfortable to sleep by herself or is she in the late stage of dementia n that is why she scared? Maybe someone else can help you with some suggestion as well.

I am caring for my 82 year old mother with dementia. She never lets me out of her sight and the only time I have by myself is a shower or when she takes an hour nap. I have to sleep with her every night because she says she is scared. I get to go in my bed with my husband on sat and sun from 6am to about 9am. It seems like my life is on hold. Its really hard to keep her happy all day. It really helps to know that Im not alone in this caregiving thing. I try to enjoy everyday as best I can.

Connie, I so agree with you - it's all based on perspective. I have 7 siblings. For Years, I resented that it was only me and dad caring for mom (Alz). Just this late May, I found this site. Good thing, too. Because with the burden/stress of now caring for bedridden dad (stroke last year), I had mistakenly, foolishly thought that my siblings will help now that I have 2 bedriddens to care for. Nope!

June 1st, I had literally given up asking, begging, threatening fam for help...even alerting them of the finalized details of my suicide plan. I had given up and even set up the date for Friday. But, there was also a part of me that did Not want to die. So, I remembered this site, got on it and posted for Help.

I will say that between commentors here and my one-time therapy, that I had to accept some very hard advice. You hit it on the nail - all based on Your Perspective.

1. My family does not care for me. Therefore, I need to care for me. (therapist)
2. My siblings have the Right Not to Care for parents. (Hard to swallow at the time)
3. To avoid the constant stress/depression of fam Not Helping, I need to separate
myself from siblings. Very difficult to do but it does really work!
4. We - you and I - Chose to Care for our parents. If we did not, we wouldn't be
here.
5. Times like this, only Other Caregivers can appreciate and understand our
stress. And can give us Excellent Advice.

How we respond to the advice is how we will handle the stress of caring for parents. It won't lessen the load, but it will help us with US. I need to be really careful of the "me". Because I'm still suicidal, I need to keep alert to the pressures. I just recently had a bit of depression and one regular commentor on this site noted my "lack" of comments. It was she who alerted me that I was again going down the "depression" path. I had even posted on my thought of the day: Life Sucks!. You would have think that would have alerted me that I was going downhill.

So, I'm just saying, it's very important to re-adjust your perspective - daily! You all take care! (Connie, go for it - with the RV trip!)

First off, this is the best forum! It has so helped me to deal with resentment for the situation I have found myself in. I am 70 yrs old, recentIy widowed and am a 24/7 caregiver for my 93 yr old Mom. She had been quite sick and a 3 month recuperation turned into 3 yrs. I have been frustrated, mad, irritated, depressed and much more. I recently found this forum and have found HELP!! I also realize now to look for what is good. What I took for thinking my mother was still trying to "improve" me, (I was the non conforming child) I now know it is her only way to show appreciation (it's all how you look at it). Instead of resenting my brother (45 min away) and my sis (17 hrs away), for still having their lives be normal, I now see how hard they try to do what they do. Money is not an object, they will do anything they can do to help. We are looking into someone coming in for another day off for me. My brother comes 1 day a week and I have an entire day off, which is glorious!! My sis comes at least 3 times a year and stays for at least 10 days. I can do whatever I want. No, it's still not the best situation. It's still 2 strong willed women (1 being unable to do much of anything for herself) trying to cope in the real world. Her biggest problem is keeping her opinions of my children and grandchildren to herself! We struggle with that one! In the near future, we are taking to the road with the RV. She is excited about that. My thought, why sit here and resent her because I can't travel so just go and see how it works out!
So hang in there it isn't what we expected our lives to be, but with a little help we will all get through it. My prayers are with all of you, for each other and for our aging love ones.

I feel guilty too. My birthday was last week and some friends came up & we all went out - they didnt mind Mama being with us. She had a good time - I was glad that she enjoyed herself but I want to be able to go out with friends on my own. It's a catch 22 situation...... Well today Mom and I are going out shopping and for lunch..... I'm giving myself the month of August to improve my situation all around...all the things I complain about I'm going to try & resolve.....respite, applying for skilled respite etc..

Mom is 98 and we just got home from the hospital today. The hospital thing is too long a story for here, but I understand about getting a life. I have some great friends - so great that they told her to come with me anytime we (my friends and I) go out. Mom, who is cognitively quite well, accepted these invitations and therefore, when I go see my friends, more often than not, Mom is in tow. I hate that because I want a life of my own. It sounds selfish, but I can't be defining myself solely as caretaker. I just can't and I feel frustrated and angry and then guilty because I truly love and respect and admire her. Oyoyoy - I'm done in.

Thank you all for the encouragement. Tonight is Rough....I'm just OVERRRRR doing this. Just like alot of other people I feel trapped in this lifestyle of caregiving. .....sigh......... so this weekend & from now forward I'm on the hunt looking for the respite worker that can give shots. You have to be so careful and have to try & feel people out. I hope it will be referral from a friend. The agency I'm using for the M-F care - the case worker says MEdicaid doesnt cover skilled respite for insluin shots. I find that hard to beleive so I am going to push the Case Mngr nurse to apply for it anyway.... ugh I am so TIIIIRED of this. I can't go anywhere....plus I have my mom's dog too. .. it's a small toy poodle - 6lbs- but still ...when I;m in the car they BOTH are always in there....arrrrghhhh I am going nutzzz..... I go to Walmart at like 7am on Saturdays while my mom is asleep just so I can go somewhere by myself!!! ...........sorry....just had to Vent!!! I am going to work hard on getting the skilled respite run through & also to see about finding a private hire to stay on a weekend. Also I have an appt for Adult Day Care... She can go there on Saturdays...but I think she has to go a min of 2 days a week. I hope that is not accurate. She should be able to go 1 day a week.,,as long as Medicaid is paying what difference should it make????... twirll twirll twirlll... can I please get out of the Matrix???...lolllll

There are lots of stressed out caregivers out there, so take solice. It's because we want to do the best job we can that we can sometimes feel so overwhelmed. It is an extremely draining experience. I am a single mom, by choice, with two young boys and my mom is 94. As each year goes on she requires more one on one care. My boys can be extremely helpful. They are just old enough that I can leave them alone with my mom for a short period while I run to the local grocery store or take a nap. What I have also found helpful is that I got my mom Lifeline pendant. The kind that automatically registers a fall even if she doesn't remember or can't push the button. Although death is not imminent she is in hospice. Someone comes daily to bathe her, change her pajamas and sheets. A nurse also comes twice a week. It takes quite a burden off my shoulders. I highly recommend you talk with your mom's doctor about contact hospice and see if they can offer you some support. I have been off for the summer and have been able to spend much of my time at home. I go back to work soon and am becoming very anxious about leaving her so long by herself. But as you mention we can do anything with Christ who gives us strength. God Bless!!!

I can relate, I am taking care of my 82 year old husband. He has dementia. I started to paint again, watercolors mostly and that relaxes me! Also try to get out once in a while, get someone to sit for a few hours, it does wonders for you!

All part of caregiving! Hang in there!

First steps would be looking for a Private Duty Caregiver that can give insulin shots, monitor glucose levels, blood pressure, diet, etc., - Caregivers through agencies are limited per policies.

You can place a caregiver Ad with specifics on care needs and hours on Craigslist or Care.com, and make sure to check backgrounds, etc.

If you can schedule coverage for when you are off from work to get time to rest yourself, that would help you have time for yourself as you need to care for you too!

Let us know how it goes! Live-in care givers are the best to have, I have found as you do not have to worry about them showing up to work on time, getting back home on time for them to go home, etc. Just start time when they come in for shift, and when they are going home for day or two off, some like to live-in 24/7.

rioblu..it will seem like just when you have reached the end of your rope, and then something worse happens. You will find how resilient we caregivers are - because we Have To Be. Just take a deep breathe from your nose - Hold - and then slowly breathe out from your mouth. Every roadblock you meet, you will learn to adjust and conquer it. Take it one at a time. Right now, your Aunt is the one with the urgency, so you will need to be there for her. Since this is an emergency, any possibility of Paying a friend/family who knows how to give shots? A lot of time, family won't volunteer but don't mind helping out if it means being paid. I'm glad that the Respite was approved. Take care and Drive Carefully!!

Thank EVERYONE that gave such good ideas, encouragement & support. I see there are so many of us out there. I have only been at this place for 4 days I am so glad I found it!. I felt so isolated before. We all have to just stick together and make it through. I'm going to look into some of the ideas & tips & Medicaid info that were mentioned. I read some that I had not even tried or even thought about as a possibility. I work full-time and here is just about the only "group" place I can come to to talk. The Home Health agencies I have spoken with will not allow their aides to give shots or even eye-drops or check blood sugar - so I will have to find a private person for that. I go home everday on my lunch break to give my mother her insulin. My Mom cannot see well enough to check her blood sugar or to give herself the injection and she also is a "brittle" diabetic her blood sugar can drop or run high. She has heart condition also & other conditions just due to aging. I was just notified today that Respite hours were approved through Medicaid!! So now I just need to find someone that can give the injections and I can try to arrange to take some time off for myself. I will get her Dr. to write orders on the insulin and try that too to see if I can get approved somehow through Medicaid. Also will look into Adult Daycare. I know God is with us. I wish Blessings for all of you........

HaVE YOU LOOKED INTO AN ADULT DAY CARE FOR ALZHEIMER'S? MY MOTHER IS IN A PROGRAM AND ATTEND 6 DAYS A WEEK AND IT IS THE ONLY WAY I COULD CONTINUE TO CARE FOR HER. MOST PROGRAMS ARE SUPPLEMENTED BY MEDICAID, BUT IN OUR CASE, THERE IS A MONTHLY FEE (AROUND 300.00 PER MONTH) WHICH IS MINIMAL WHEN YOU CONSIDER THE REDUCTION IN STRESS AND SOME FREEDOM. ALSO, MOST PROGRAMS HAVE A NURSE ON STAFF THAT COULD ADMINISTER HER INSULIN. IF YOUR MOTHER IS ELIGIBLE FOR MEDICAID, THERE MAY BE NO MONTHLY FEE, DEPENDING ON HER INCOME. GOOD LUCK

In answer to your question about caring for your 91 year old mom and no one to help you give her insulin shots......have you spoken to Social Services about receiving help? There are other homecare providers out there like Visiting Angels. I am not sure what there fee is but it is worth a try to see what they can offer you. I know that the support group I belong to has respite care but they are more like babysitters and cannot give eyedrops or shots to the elderly.

I can relate to all of your stories as I too am sole caregiver for my mother who is 87. She has Dementia and Congestive Heart Failure as well as declining health issues due to aging. I am chained to the house for fear that leaving her alone for any length of time, she may fall down the stairs or forget to take her medicines. Depression and anxiety plague me daily as I try to get mom to take an interest in things other than sitting on the couch watching old movies or sleeping until 4:00pm. I feel so guilty when I allow her to sleep since the majority of time I am drained of all energy and find it difficult to clean house, cook, grocery shop, take care of the dog, etc. I cry just about everyday wondering how much longer mom will be able to sustain her health. I worry about the reverse mortgage she has on her home and where I will live once she passes on. The house will go to the bank and neither mom nor I have any investments or assets saved for emergencies. My brother is no help and is in denial. He probably thinks since I live here I can do it all alone without financial help or physically getting someone to come in and help. I have found that family and friends often run the other way when you need help the most. My only hope is my faith in Christ and trust that he is in control and will hopefully reward me for taking on this responsibility. The Bible clearly states that we must honor our parents and after all as I look back, she has helped me through many crisis situations. So, fellow caregivers, we are doing the Lord's work if this is any consolation, and if we look at it in this light then the burden becomes a little lighter.

Work was my only salvation, and I work in mental health. Ha ha.....I started spending more time with my kids away from the house ( mom lived with us), but I always fely guilty because when wed get back shed give me 20 questions and pout becuase she didnt go. I know I shouldve offered to take her more often, but I needed my time too.
AS far as Medicaid covering her respite care... if she can go to an in pt stay, then they will have nurses that can help with the insulin and blood sugar readings.. but you might want her Doc to write an order specifically stating she has to have her insulin administered. As long as its deemed medically necessary, caid should provide that service

A neighbor who is caring for a mother in the early stages of dementia has found that she can keep her mom happy for hours by letting her watch Harry Potter videos.

I have reached the point with my husband, who has dementia, that I'm either going to get 24-hour help in-home or send him to foster care, and there's a little part of me that feels I ought to be able to do this, but you reach a point where it's hurting your own health. Ask a government agency on aging if there isn't some visiting nurse's association who could come give the shots. Find an agency for in-home care even for a couple days a week -maybe one of their people can do shots, too. I've found if I don't have lunch out or some other time for myself at least once a week I start to go batty. And then you feel resentful of the loved one and it's hard to be a caring caregiver. You gotta get help -start with one phone call and see where it takes you.

Personally, if u can afford it, a skilled nurse should be able to handle insulin shots n have knowlege of diabetes. Yet, if you are in the same boat as many of us then I would suggest to find out what is offered in your local area.

Go to the top of this page where you see blue-colored blocks. Hover over the area on right that shows, 'Caregiver support' then, from the drop down list look for n press 'Find Agencies on Aging.' I think u just fill out information of what state you r living n it should give you a contact #. This is I think but don't quote me, a nonprofit organziation. I know, I have not had to pay them anything for their services. They have already done an assessment. n follow-up. They have helped me with local resources as for Respite Care places, financial issues n support groups for yourself as well. Maybe they can help with the situation of taking care of a person with diabetes that is insulin dependent. Also, if the person with glucoma can see through a magnifying glass n they can take care of themselves, u can sometimes buy a sm magnify glass that slips over the syringe from a local pharmacy not sure over the epi-pen but I bet their is something.
I would also check out alz.org for help n explain the reason n what u need help with n maybe they can help some of y'all that r needing help. I hope this is some help for y'all. Remember to stop n breathe.

I feel for you. I too have been caring for my mother. But she recently got approved for a home health sitter to stay with her so I can get out and make some money and get some sort of regular income. I had to quit my job and stay home with her. She was in and out of the hospital so much that it was imposible to work anywhere. My sister is also helping on the weekends. So I hope that you may get some help also. Call social services they can point you in the right direction. Good luck and hang in there.

Securing support is essential although It may be hard to ask for and/or accept help, but you are not alone in dealing with being the sometimes over-whelming burden of being a full-time caregiver. Think in terms of concrete actions that can help. Could a friend occasionally run errands for you? Could a neighbor or friend keep your mom company so that you can take a break—go to a movie, the gym, take a walk or a drive, or do some shopping for yourself so that you don't feel so isolated or overloaded.

Some caregivers find support groups helpful. They allow caregivers to share their experiences & exchange information. Some support groups may be linked to hospice care organizations, stress management or exercise classes. Support groups will remind you that it is not selfish for you to feel frustrated, overwhelmed, resentful, etc. and to help you find ways to attend to your own needs.

Support groups can be in person or they can be online. One of the best ways to find groups in your area is through the Family Caregiver Support Program in your state. Contact your local Area Agency on Aging (AAA) through the Eldercare Locator, 800-677-1116 toll free. If you want to talk with caregivers who are in similar situations, the AARP Web site has online forums where you can ask and answer questions, share your caregiving experiences, and learn from others.

Try to stay positive. With your mother being 91, your circumstances are bound
to improve before long.

I have seen caregiving from both sides of the coin. I was an aide for 10 years and now take care of my significant other. Gare givers need to take care of themselves. It is not selfish. studies have been done that show caregivers die or have major health problems when they don't seek relief. It is just healthy to take care of yourself.Social workers, agencies on aging can lead you to resources. Sometimes even though we don't want to think so our loved ones may need more care than we can give them. Sometimes just for their own safety. Lack of sleep and stress can kill and that is why respite is so important.

I think the hardest thing I've had to deal with is mother's favortism with the other siblings. Care giving is a 24/7 job. I do my best to visit my mom in a nursing home, but when I come around she snubs me all the time or she will say mean spirited things to hurt my feelings. I know that I am not her favorite daughter. But I visit her when her other (8) siblings don't. So going crazy is normal. Because
you put so much of your life on hold to care for an elderly sick parent. Lord only knows. Hang in there, there is a bright side somewhere.

You can get visiting nurses and visiting nurses aides to come in paid by Medicare. There are adult day care centers and you can also hire sitters. Visit the site www.care(dot)com (I posted it this way because this site blocks any useful link you try to post) . The Care site allows you to put up an ad to hire someone at the wages you choose to come in when you need them and adult care is one of the options. You can get someone to come in whatever hours or days you need as much or as little as you need and you can have someone stay while you are on vacation. Care (dot)com is a great place to find help. I would also suggest that your mom be put on an insulin pump. It will check her blood sugars and send a bolus of insulin when needed without the need for someone to offer her a shot.

My mom will be 94 yrs old the end of next month August 30th she has Dimentia and Alzheimers' and since March we have had her taken to the Hospital which turned out to be a Urinary Tract Infection first they sent her to a geriatric hospital she stayed there for two weeks, I would try to talk to her but she would start biting, kicking, and leaving the house and I would have to follow her and try to coax her to come in the house that was the first time I called an ambulance cause she started acting that way and they put her on Risperdone for agitation and Trazodone for Insomnia I have been giving her that since she was released from that hospital plus she has very high blood pressure which she is taking lisinopril and Carvedilol and Aricept the Exelon Patch also but she will not keep it on the second visit to hospital another UTI she was there like 3 days I am with her all day until my brother gets home from work and then if he is not tired he will take her out for a while but now she doesn't even eat anymore chews it and takes it out of her mouth so looks like they will not be going out to eat anymore so he just takes her for a ride, I have the worst time taking her out when we come back she won't get out of the car says that this is not her home this is her home we moved in with her so I just have given up in that plus since I'm here with her at all times she hates me but she loves my brother he not quite two years younger than I and I'm 56 we have an older brother which is not quite two years older than myself that she doesn't remember and he was her no. 1 son I just get so frustrated cause she justs walks around and around the house and her words don't come out right anymore unless it's a curse word that comes out perfect lol Myself and my younger brother have had Lymphoma and have gone thru Chemo and we are in remission thank god but we are not supposed to get stressed out so we help each other out when I can't take it no more I tell him I'm going in my room well when he gets home she tells me to go away anyway It is so hard we love her but we don't know this person We are trying to hang in there that's all we can do while we are going crazy

I too am taking care of my Mom who is insulin dependent and has glaucoma so she can't see to determine blood sugars/insulin needed. Also, she is very "brittle" with alot of low blood sugar crashes, so it is hard for someone to determine how much insulin is right. I went to our local senior center and talked to a counselor there, it really helped. They have some forms/questionaires that determine your stress/mental situation, hours of care given, income, etc. Then they are able to determine if you qualify for different programs. Have you checked out any Adult daycare centers? Try meditation, yoga or get a treadmill, this will help with the stress and you will be doing something for yourself. Hang in there!

rioblu, what do you mean that no one else can give your mother her injections?

Is the reason she can't give hersef her shots her vision problems? Does she have other impairments that interfer, such as poor memory or confusion?

How often does she need shots in a day? Is the dose determined by blood sugar readings and other factors, or is it set to some standard amount? Would an insulin pump simplify the situation to some degree?

Your mother needs insulin. If the case worker is trying to arrange for some respite care and he or she is not including a way for your mother to get that insulin, then the case worker is not arranging the right thing! This is not about Medicaid "not covering injections." It is more likely about ordering the correct kind of assistance. If mother is eligible for homemaking services, for example, you can't tell the house cleaner, "Oh, by the way, while you are there give Ma her insulin shot." Whatever programs she is on, there are some rules about who can do what kind of services.

Giving your mother her insulin injections is tying you to her excessively. It also puts her at risk should something happen to you temporarily. What if you are sitting in an ER waiting to have a broken bone set when it is time for Mother's injection?

Have you had a serious talk with Mother's case worker about the insulin requirements?

I'm in a similar situation. How do I keep from going crazy? You're online. Find entertainment there that you enjoy (games, look up friends on Facebook, etc.). I'm also learning to recognize when my 92-year old mother is being manipulative (yes, that happens) or when she really needs me. Pay attention, draw your lines in the sand and take control. You may find that you can create space for yourself. I've also learned to rearrange things in the house that could be dangerous to her, like removing knobs off the stove. I'll leave snacks for her so she's not calling me just because she wants a piece of candy. I've learned that when she's asleep at night I can slip out for a couple of hours to breath and enjoy myself. The house is locked securely so she cannot get out. No, I haven't done any vacations because there's no one to help me, but the short breaks with my contemporaries do help me maintain my sanity. After a while you may learn to relax and learn that we do not have control over everything. PS: My mother confuses day and night. I spoke to her physician about this who said that's very common with elderly people. He suggested I give her Benadryl so I could get some rest. He said it was the safest. If your mother's sleeping habits are part of your problem, do not hesitate to ask her doctor about sleeping aids for her. I don't use this often, but I'm learning slowly that if I do not take some precautions for myself, NO ONE will be there to care of my mother OR me. The same people who forsake your mother will not be there for you either. Look out for yourself as best you can and do not feel guilty about it.

Adult daycare centers are available in most areas. They have Cnn's on duty,who could give a shot. I had to fill out many papers for obvious reasons,they need to know many details. Most places only charge around $8 an hour. In my case, to have a few free hours is a blessing. Many local churches,Area Council on Ageing, will help you. You must seek out a helping hand and be surprised at what is available.
Good luck

The more I read from all of us in the same boat, I find there is a growing need for Adult Day Care Centers. I have looked in my area but haven't found a thing. I don't necessarily want to "get out of the house", I want her to go somewhere so I can enjoy relaxing alone time. She needs to be with people her own age (93) for a few hours a couple of times a week. I don't want to put her in a nursing home and she can't do Assisted Living, but I could take her someplace. It would give both of us new interests! Maybe we should band together and start one!