This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
What can u do? You can refuse to be his "prisoner", You can, as already suggested, set boundaries and answer the phone when and if it suits you. This is very controlling and unhealthy behaviour on his part and you do not need to buy into it. In fact, buying into it is doing you no good. It drove me nuts too. It would be reasonable to let calls go to voice mail and tell him you will answer at certain times-your choice -as sdpeg does.
sdpeg -nice to see a student know knows that phone calls in class are not allowed. I had to emphasize that - with the rider if they had a family member in hospital or something like that, to put it on vibrate and leave the room to answer. Many students had young children.
have a good day everyone
Good for you for writing a report. Probably more of that should happen. I think it is scary to be sick at any age, and more so when you are old and maybe helpless to a degree.
Breathe deep and do something good for yourself.
Lu, glad you stuck your head in, hope you are doing ok...
Jam, no Sonny did not pick up sticks today, we actually got a lot of rain, yes the wet stuff from the sky....I even took pics, I know that sounds so silly, but when you have been in a drought as long as we have, it doesn't take much to get you excited to see rain...
Seeme , hope the MIL doesn't stay long, did you get her some crocks that don't shrink.... I swear that is the one of the dumbest things I have ever heard..... get her out of there before you end up in the spa..... or at Jam's pond.....
Hope everyone had a good day.... the roof didn't leak too bad, but we are so blessed to get the rain, I won't fuss about it.....
Vic, are you tired today, haven't heard from you??? hope all is well...
More later,
Vic I am so sorry to hear you are having trouble with dad. Not sure what to tell you to help. Just that we are there for you hone...
Lu ... good idea to do the writing there isn't a lot of doctors for the older generation here either. its why i am so glad I have Doc Hassam for mom. She suprised him the other day at the office gave him his christmas gift early. He gave us both a hug and took a card lol.
Ladeeda I know I have to learn to tell my family NO espically idiot sister. I just detest conflict and I know if I cause a ruckus they won't call or come see mom and that will be worse on mom. Not that they call or see her all that much at all! Oh i wanted to share something about idiot brother ... he got his the other day. He drives taxi and he used to drive for the cab company that mom and I use regularly. Well his sister in law works there now he went to visit her. Now the gang there knows the trouble I go through day to day. Getting places and such. Sometimes if I need to get a place its cold or raining and they see me walking they will pick me up and take me where I need to go. Well he started bad mouthing me at the cab stand .. lets just say big mouth got his butt handed to him BY his sister in law and three of the cab drivers there. I was shocked but the one lady cab driver told me they weren't gonna listen to him say crap when he don't do crap for his mother. He stormed out afterwards I guess but they made their point across. it was nice to have someone stick up for me against him once in awhile.
Onto homework and early to bed tonight. I didn't do as well on the test I took yesterday as i had hoped but life goes on.
Good night
SDPeg
Bama. your grandfather probably calls you all the time because nobody else is so patient with him... I don't think he wants to treat you differently because you are a woman and the other caregivers are men. Probably he trusts you more and he feels more protected by you.
I don't want to sound like a saint. This is a period when I am stressed and impatient and in general I feel like a lion in a cage. When my mother calls me 100 times when I am cooking or starting washing machines and so on, very often I scream at her and I tell her to leave me alone. But after 1 second I understand it's not her fault if she doesn't understand I am so tired (she has Alz). This life that we live is a constant seesaw of rage, compassion, understanding, killing instinct, love, hate... We have just to try to survive among all of this. Sometimes I think I am at war... And people in times of war just try to survive...
Ros- I'm with you- Cindy, 7 years? I would be having some major panic attacks!!!
We are coming up on 2 yrs taking care of dad. Or it will be in march. And i hate to say it but i wonder how long this will go on? I wonder how some people take care of their loved ones for years and years on end, putting their life, relationships, families, vacations etc on hold for that long and how it must affect them. I know having to take care of dad has changed and affected me and my family. Their are things that me, my husband would like to do with our little boy who will be 5 this week but I am tied down here having to look after dad. I already feel like i have cheated my husband and my little boy out of so much in the last 20 months. No one knows what that feels like except another caregiver. It's a hard pill to swallow. I feel guilty that i am the reason that we can't take off and go places with connor my little boy. And that is a awful feeling. I feel like one of these days i am going to wake up and connor is going to be 10 and i am still going to be looking after dad. And his childhood will be gone along with missed experiences with him at this very tender and precious time. Am i terrible for saying all of this? Does anyone understand what i am feeling? I just want my life back how it was before this nightmare began. Selfish of me, huh? hugs stormy
And no, the phone calls won't stop, but you may find a way to not answer every call and be ok with it....one thing talked about here is guilt.. so you may find some ways to handle that and start to feel better about some choices you may have to make in order to maintain your sanity....
And you may need to go to the Dr and get a good check up and find out if the anxiety has another cause or you may consider some meds of some sort... many of us here are on antidepressants and anxiety meds..... that seems to be part of the caregiver life....
And I like what Rossella said, and I too think he feels safer with you... he is a man, he doesn't want the male family members to know he is lonely or bored. You didn't fill out your profile, so I will ask how old he is, what are his health issues, is he able to walk, ect.... fill us in so we have a better picture of what you are dealing with.....none of us have all the answers, but collectivly we do have a lot of experiance.... I hope to see you here again, and I will say again, you are safe here to say what you need to say.... you won't be judged, and we will help if we can..... your are doing the right thing for yourself reaching out..... prayers and hugs to another tired caregiver....
Here is a lesson I have learned.
I have spent the past 2 years having to restrict my activities because of health issues. I wasn't allowed to bend, lift, drive, or hold my grand daughter. And I could not read (still can't very well but that's going to improve). You get the picture. I was forced to retire because I couldn't do any of these things.
During this period, my Mom's dementia has been accelerating and I can't get to her easily. I have siblings but they, for various reasons, are only involved in Mom's care periodically.
I am not a wonderful, patient and wise individual. I'm a 60+ year old who loves people and grew up in a dysfunctional family. I've had some tough years and some great ones.
Just like me, much of what is happening to you is our of your control. The only choice is to identify, for you, what you can control.
What do you do to relax? Music and exercise are great for me.
The only activity I was permitted was walking for the past 2 years. So, I put on my sneakers and headphones and walked my way through 3 pairs of shoes. Sometimes I left the cell phone at home - on purpose. In bad weather I do have the benefit of a treadmill, so I walked inside. (Trust me, I spent a month being depressed and angry before I figured this out.)
Does you GF have a pet? Maybe a cat would be a good companion for him. My two fellas have been very important in my very restricted life style. They keep me company, cuddle with me and entertain me.
By the way, my circumstances have improved and I am now allowed to bend, lift, hold the babies but I still can't drive. It's okay. See....circumstances can change. I'm grateful for my improved life - and anxious to get on to the next phase. But... I need to take note of the blessings.
That's an important part of caregiving. Take note of the good moments and treasure them. I keep a journal recording the good things in life. There are a lot more of them than I thought when I wasn't recording them. It really helps!
Since I found this site and became part of the community, I have better control of my stress. Some days are better than others. But when I see what others are dealing with it helps me put things into perspective.
Take care,hon. Just like the oil in a gravy, when the heat is off you need to rise above the weight of your circumstances. No one will provide you the means to do this so you need to find it for yourself. We're here for you! (((hugs))) BEE
...., grant me the serenity to accept the things I cannot change,
Courage to change the things I can, and the wisdom to know the difference.
Living one day at a time.
Hugs and good thoughts for all of you. BEE
Up early and drinking coffee and I can see ladee was up REAL early....:) Let's see, have to spend the day moving things around in the garage.....bought a new vehicle yesterday so have to make room for it and hope it fits. But it should be easier to clean today since the temps are going to be in the 40's.....last time I was cleaning out there it was around 100 degrees.
I can see the pain and anxiety of care giving is starting to make itself stand out again......or is it just a little worse because of the upcoming holidays which seem to always be a little more stressful? Ladee calls me the "Mother Hen" and yes I start to worry when "my chicks" are feeling the pain. I've been there and I know what you are feeling and like others have said, you are the only one who can control those feelings. And it's perfectly valid and permissible to feel like you could bang your head against a wall, scream, yell, think dark thoughts.........you're not human if you never have these feelings and if someone tells you otherwise, they are lying to you. There are plenty of rewards in care giving, but then you start to factor in the cost involved with your own health and mental well-being, the lost hours with taking back and forth to various appts, the cost in hiring outside help when you realize the job is too overwhelming, the destroyed family relationships because siblings don't want to step up and help.........whew! Is it any wonder why the amount of anti-depressant and anti-anxiety meds have increased? If allowed, care giving will sap the life right out of you. There are varying degrees of disability and for those who are not yet dealing with the horrible results of Alzheimer's or other forms of dementia don't know the true extent of what it does to the care giver....and it's those people who try to make you feel guilty for falling into that "black hole" occasionally. We're here to help keep you from falling..........and like ladee said, it helps to come here and just talk. We've all experienced the dark side at one point or another, so anything we hear doesn't phase us at all. And you will never be told you are wrong for feeling the way that you do. When we get to know you better, we might make fun of you, but it's only done out of love and respect........
Hope everyone checks in today........more coffee then maybe I will have the energy to do something.
Love and Hugz to all,
Jam
Ladeeda - as always, you are a foundtin of compassion, understanding and wisdom. We are all so privileged to know you.
SDPeg - You have such a great idea! An inspired community. Think of it: not only could we support and help each other regularly as caregivers but we could, as a group, have the power to improve the health care our loved ones receive. The possibilities are endless. What a concept!
When my Shawn was young I was caring for my then MIL and SIL (who lived with me) with their various mental and physical problems. My, then, husband was a non particpant in family life. The stress on me (working full time and keeping house without help) was tremendous. Talk about supermom!
So I had to learn to work through the guilt and anxiety. At first it was impossible. I had anxiety attacks and took antidepressants, too. Then, a counselor hit the nail on the head. She said I could be a victim if that was more comfortable. But, she suggested, if I could accept that I could not prevent all bad things from happening to MIL and SIL then, perhaps, I could do more things with Shawn.
She was right. The world did not fall apart and MIL and SIL survived. I arranged for someone to check in with them, if necessary. I began to enjoy taking Shawn places. It just took planning which, frankly, took less out of me than all the stress and guilt I had been carrying around.
Initially, I had to push through the almost panic I would feel. I would call home to check on them frequently, and eventually I learned to relax more. I actually took Shawn to Disney one year - and everyone survived!
Hon, you are so compassionate with everyone here. Look inward to the hurting soul you live with and make a conscious decision to take care of yourself, too.
(((hugs))) BEE
Jam, if you want to see how Italian people reacted to Berlusconi's exit, take 2 minutes to watch the movie that my cousin Franca shot in the streets of Rome the night he resigned. It's on my wall on Facebook! it's called "Bye bye Silvio". You can't see a lot of Franca but you can hear her laughing all the time!!!!!
Bee- Thanks for the words of encouragement. It does help just to get feedback on what you are going through. To know that you are not alone in this crazy life of caregiving. Thanks.
Ros- Hey there sweetie, Yes he is loved and i think he knows that. And i try to be the best mom that i can. I guess it's just that when i first had connor, this is not what i envisioned our lives being like. I know no one knows what the future holds. Oh well, it is what it is. Well, sis is calling me i will talk to ya'll later. Love and hugs for all the support and wonderful words. Stormyyyy
Stormy, many moms have to work , so maybe to Conner, this is just your job.... I'm sure it is affecting you more than him, because, as a mom, you are missing out on so much while he is little. We never get that time back with them, but love is the most important thing, and he knows he is loved..... hope he has a great bday.... I know you'll post pics on FB......hugs to you
Ro, happy to hear the guy stepped down, maybe things will start to improve for you... taking all of Mom's money is so wrong, what if she still lived by herself??? But that happens here in the states too.... elders are doing without food to be able to get their medicine.....
SDPeg, maybe that is why you are getting your degree now so that you will figure out a way to make the community caregiving a reality...... as more and more families are dealing with Alz, then more and more caregivers are carrying the load.... I wonder where we are going to be as caregivers 5, 10 years from now... Many of US will need caregivers by then.... and the government still doesn't get it how many trillions of dollars we are saving them by in home care....
I have been fortunate that I have worked for families that can afford in- home care... it is not as expensive as going thru an agency, and going thru an agency does not guarantee good help.... the caregiver is usually only paid minimum wage, so you get what you pay for...... and for some , it is just a job, more than that is needed to care for the elderly, especially if Alz is involved.... Every Alz patient is different, so there is no 'blanket' care... what works for some will not work for others, and what works one day, does not work the next.....
And so many are taking on this job without any education about Alz... and even for those of us that do know, it still baffles and confuses.... so , like I said, someone has to start the community outreach, maybe that person will be you....
hugs to everyone this morning, gotta get moving...
anything soecial triggering the anxiety? Are you able to get help doing this job and get out sometimes by yourself?
I. here if you want to chat.