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Thanks for sharing Joan! Just knowing that other people are going thru the same ordeal is helpful. Thats why I thought to start a discussion about how we all can deal with the stress that follows along with caregiving. You have made me consider starting to attend local caregiver support group. I think I'd benefit a great deal from talking to others that are caregivers. Thanks! Please leave more comments so we all can help eachother:))KB
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Kelly, I've found that people in general can be kind and they try to be encouraging, but caregivers truly know and understand the ups and downs of being a caregiver. I've been to a couple of different groups and one class that was hosted by our local Alzheimer's Project. The class was small and the participants were a variety of spousal and parental caregivers. We truly bonded and continue in a bi-weekly support group, and what I've appreciated most is that whether any of us is having a good day or a rough day, the caregivers can share their raw emotions if they feel like it and no one censors them. Everyone just gets it that some days are good, some are great, and some may make the caregiver just want to turn the calendar page to the next day and put the current day behind us. Hope that makes sense. Anyway, I tend not to go into any real depth when non-caregivers ask me how things are going, and that can lead to feeling like few people understand the typical stress and concerns. However, when I hear other cg talk about their day, their situation, their concerns and stressors, I know they understand because they're telling my same story. It truly helps to know we're not alone and that others have the same concerns and feelings we do. I guess it's empathy vs. sympathy. Helps make a tough situation feel more "normal" somehow, plus it's refreshing to hear other caregivers' ideas and suggestions for how to work through specific situations. I leave the meetings and go home feeling understood, refreshed, and armed with new insight and strategies to help with our day-to-day caring needs.

Blessings!
Joan
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Todayis one of those days I just want a one way ticket to a far away place. My hubby keeps me up all night roaming and then wants to sleep all day. I have no energy to do anything during the day. How do you cope with this issue. He refuses to get up now and I get tired of trying. Just say to hell with it and let him sleep
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I was there with my Mom until the neurologist prescribed dapakote for her. I made her stay away days, or the daycare did, and she fell into a pattern of sleeping again. So sorry, I know how hard it is but keep him awake or hire help to help you keep him awake if you can or you will be up again tonight. Talk loud, put on fast music and do to him what he unknowingly did to you all night. He might get t'eed off, thats ok, well worth it tonight.
Good Luck!
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Thanks, I will give anything a try. I am exaulted. and he is still sleeping like a baby since 9 last nite. I could just go in there and throw cold water on him but I just love him to much for that
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Omg you dont want to give him a heart attack do you? lol
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Lord How Mercy No. but as I pass the room and see him so peacefu I cnat't help how I feel. I can only imagine what my night will be like tonight. I also keep my 3 yr old grandbaby that is 3 and a 2 yr old so I am up at 6:30 cooking breakfast. Now b4 you go off the deep end let me explain. Both sets of parents are in the process of finding other sitters for them but because they are MY babies I refuse to put them somewhere they will not get the same love grandma is giving them. Jim's condition just blossomed into what I am dealing with 2 Tuesdays ago.. I had to put him in the hospital last week so I am in a new ballgame now. Time to call in his family that all cannot even amagine what I deal with on a daily basis.
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Awe yi yi, how the heck can you handle all that, , you'll be the sick one. I hope you get help from the family or something. You're a special person Grandma!
Luvmom
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Together is important. People who are not in a care-giving situation do not get it and some just don't want to hear about it. pick your listeners. I was so upset last week when a "friend" who always told me to call anytime, and said she wanted to stay informed about the mutual friend for whom I am the caregiver, has her husband sort of knock the phone off the hook when I called to update her and she freaked out when mu name showed up on the caller ID. She never knew I heard her say "Oh, no--don't answer that!" I felt devastated. Then, I told myself that it just doesn't matter--thin-skinned old coot--she'll never hear from me again and I'll continue to care for her friend and my mom. People like that can just kiss my a$$. Don't let it get to you...karma.
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Its been a while since I checked on this discussion board I started. I am so glad that some of you left comments, and vented or just stated how your day as a caregiver went! Things between me and my mom are not so great right now. I still want to make sure all her needs are met, but I decided that I need more room so considering moving in a couple months, and she isn't happy about that news. I do understand because she does rely on me alot, but since she really tends to her own personal care needs I feel that we could still make things work out even if I move. Its a upsetting ordeal, but sometimes we must do whats best for everyone involved even if they don't see it the same way. I am not going to abandon her. I have taken good care of her for two years. I'd still pledge to drive her to her appts. grocery shop for her, and make sure has her meals each day. Well glad to see comments on here, and people being kind to one another, and receptive of what others also go through.:))
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Well, I did not have to throw cold water on him last nite. He got up for a little while because 2 of his neighbor buddies came to visit but he was ready to go back to bed when I was at 10 'clock. He did pretty good last nite. I have a terrible cold and bad cough that is driving me an all around crazy. As if we can get any more crazy. You are right aout some of our so called friends that say thaey want to help. I have called some of them several times to sit with Jim and Oh My Gooness, I'M Sorry, I have to do so and so. When this chapter of my life is over, if I make it, I will truly e the support for a caregiver that is going through what I a goind through now. No Excuses
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a very helpful suggestion made to me by a friend was to buy a bag of potatoes, the smaller the better, and each angry or upset thought that comes to mind, pick out a potato, squeeze and throw it as hard as you can at a target, or in the woods nearby, keep on doing that until you feel better, it works for my son and myself because of our stress with my husband at home with alzheimer's, God bless you all who are dealing with insurmountable stress like us
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I had no relief as a full time care-giver for 3 years of caring for my Mom, except for when I went to the Dentist-Wow! My time alone came late at nite-if Mom went to sleep and stayed asleep. I would stay up till 1 or 2 o'clock and watch shows Mom did not like or could not watch(she thought crime shows were real)All that did was make me more tired in the morning and stress me out. Care givers Must give themselves a BREAK.. It is no good for yourself and no good for the person you are taking care of. Eventually, you will break down and then who will take care of your loved one?
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I was awakening with depression every morning. I moved to another bedroom so I don't hear my husband (dementia) moaning ,talking, or trashing in his sleep. I put a radio in my room and turn on classical music the second I'm awake. I hired caregivers. (Even one day a week is helpful). I made plans to be with friends one day a week, when caregiver is here. I ordered Netflix to watch at night. I bought a dry eraser board and prioritize things I must do the next day. I take a daily nap and tell friends not to call during that hour. I buy frozen dinners (Stouffer's and other companies make meals for two). They get popped into the microwave or a frying pan and are done quickly. No more gormet meals! I invite friends over for ice cream dessert after dinner. (I need contact with loving and caring friends). All of these have helped the depression. The best thing was that I told God I needed Him to take over and show me how to proceed. I was blessed and you will be too.
Corinne
Give a hug
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Thank you for all of these wonderful ideas..my 90 year old Mom has been with us 11 months now- I am fairly new at this so need encouragement sometimes! I think I made it to easy on Mom at first- word to the wise- do not wait on them hand and foot. She loved it and I was getting worn out. We had a talk this week and thank goodness I was able to share with her that she can get up and get her hot drink if she needs one....she has had to go back to therapy for not exercising more. The hard part for me is being the parent to my Mom- feels strange but now I realize that I simply HAVE to. I love all of the ideas of how you all cope!!! God bless you all today as you caregive!!! Do what ya gotta do!!! They did it for us!
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What a great idea. Thanks to everyone for sharing. I was nearing the end last week....really blew up on Sunday night when 'MIL' got up and started hacking snot and spitting at 12:30 am. I just had it. But, this brought about a great result. My husband and I are more committed than ever to making sure WE are strong and on the same page. I made a reservation for tonight at motel nearby and another at an inn near my dads on Friday night. Next week we already have one night booked. What I did was, I took control of my life. I figured out that 139 or 168 hours each week I was committed to mom. The other hours I was shopping or hiding in another room to avoid mom while another caregiver was here. This wasn't sustainable. Pow wowed with niece, hubby and sis in law. The sister gets it now. She was only doing 16 hours a week and she gets it now. Numbers help...so do colors...I made a chart event. It was all red....almost all red. MY COLOR. So, now the sister is sleeping over two nights a week and the niece will continue to provide us a respite all day Saturday. When I had the other schedule, I still woke mom up and made her breakfast and made sure she was dressed etc...before the sister came. Now on the nights she stays...we are gone and she will do that in the morning and free me up. I feel such relief. We also agreed that the end game plan is to rent an apartment with two bedrooms...mom will live there and we will all rotate nights. This seems to be a lot more equitable and I am so so happy about that. I was bitter and angry that I had to give up school and stay home with my MIL full time when nobody else in the family helped much. Now I feel MUCH better.
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My counsellor suggested that I pay attention to all that I do for my mother and others instead of feeling guilty and bad when I feel I could have done things better. I often forget to do it, but when I do pay attention to all the little things I do for her, it helps me. I live in her house with her, and she has lots of "catastrophic reactions". For the first year, I thought she was mad at me half the time. Now I understand that these little tantrums ( or big screaming ones) come from her damaged brain, and don't mean she's angry with me. She is often withdrawn, not talking much nor wanting to do things. I spend so much time and energy trying to arrange for her to make scrambled eggs or French toast or hang clothes on the line, but then I get discouraged when she yells and hits at me.
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Stress? What if your fairy godmother is the wisest, smartest version of yourself-whispering from the future:
' Stop treating yourself as an afterthought. Eat delicious food, walk in the sunshine, jump in the ocean.
Say the truth you are carrying in your heart like a hidden treasure.
Be silly, be kind, be weird.
There is no time for anything else.
Quote from Fairies, Myths and Magic.
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Speaking of netflix. I love it. We also borrow dvds from our local library. Our local library has a wide selection of dvds. Suggestion: borrow travel dvds, perhaps of tropical regions with palm trees, beaches and the works and have your loved ones watch it. It will help relax them and lift their spirits. Also, take them outdoors into the sunshine and have them get fresh air. It works wonders on their wellbeing.
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I would feel a brief time of relief half an hour after the caregiver showed up at my mother's house, and I didn't get a call to drop everything and drive over there because of some dire problem. For the time the caregiver was there, I felt at ease. When I got mom into a nursing home I was finally able to see the sun come up again, to feel I had a few more years of life to enjoy, and I have made the most of that....when mom was still in her house, to make myself less stressed, I would try to follow a routine in my own home and not just sit and marinate in 'what-ifs'. Having a little control over that part of my life was helpful, didn't let things go. Went to bed and slept as best I could, knocked off the booze, and tried to keep busy.
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Dealing with caregiver stress is never easy, but crucial not to get to burnout stage....and I know how stressful it can be. Mom fell week ago, and injured her leg, and to say its just been stressful is a huge understatement. A few days there I didn't even know my name. My feet were run the hell off. Thought she was going to have to go to re-hab, but she doing better, but still home bound. I hope things get back to the old normal, but with moms age and declining health I try to be realistic, and know it will get more trying possibly for better. SO afraid she will fall again, and this made 3 times in a year. Worries me to death. I am still finding time to shop, and do things to make me happy. I have a family too so just to find a fair balance. All the feedback is great. So please comment and vent what's stressing you out the most and better yet what's your sanity??
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Am very much of being at the point that says no more. Today just exaggerated what has been a really stressful weekend for me. Not because mum is near the end of life ...she isn't. More to do with me wanting to be at my end end of life so I don't have to tolerate this from her any more.

Started yesterday when I finally made 5 meals of which she ate 2 and I threw the rest away. You choose what I eat she says, then when I do she doesn't want it. SO home made stew - doesn't like it because it didn't have dumplings and I didn't have the ingredients in house and she was 'too ill' for me to go out (Then I see she has a stash of sweets that she got on the way home from church in a box by her chair and that she has been eating them. She spat it back out on to the plate - so stew thrown away. What would you like (now between gritted teeth) Quiche - so I did quiche she ate half of what I gave her - didn't like that quiche it had too much onion in it OKAAAAAY would you like something else. Macaroni cheese but just a tablespoonful. I made the stew into soup and made her macaroni cheese and she ate a minuscule amount, probably no more than 2 teaspoons
Then wanted cheese and biscuits which she devoured.

So today I was looking forward to

We were to visit son and grandson today. Now she had a good night she slept solidly for 5 hours but according to her she had been up and down all night and I know fact she hadn't been because I emptied the commode when she went to sleep at half mast midnight and by half past five this morning there was nothing in there. She woke up finally at 8 and there it was....the face that said its going to be a grim day. She said I couldn't go anywhere as she felt rough. In what way? In myself How in yourself? (mentally thinking that would be your selfish self then). So I rang son to apologise but I had to miss his birthday unless he could come down. Which to be fair they did,

Meanwhile she sits and eats sweet flavoured yogurt/ malted milk /toast and marmalade (poorly? attention seeking more like)

BUT he got here and took grandson out for a walk - which I couldn't go on. So that was my fault too. I can feel myself absolutely bubbling with anger and frustration. So then it was I want to go to the toilet...then will you wipe me (which she can do for herself). Then she wanted me to cream her (which I had already done) then it was I want the foot spa you never do my feet (did them last night) then are you ever going to tidy this place (it has packing boxes for goodness sake - so I move them out of her room and now they are ALL in mine)

Then she wanted her ornaments back and when I refused to open sealed packing cases that was wrong too.

She refused every option for lunch so I ended up cooking one thing for my daughter and I (we try not to eat fatty food too much) son and grandson wanted pizza - so Mum did too - then said she didn't like it - then wanted a sandwich did her that .....it was the wrong sandwich. What about home made soup - not that crap you make (which would be the same soup she drank two bowls of last week)

Every time she changed her mind she looked at my son and smiled. he came out eventually and said she is just trying to wind you up.

Well she has succeeded. I don't want this any more. I am at the point where I can't be in the same room as her without wanting to be out of it. Wasn't it enough she let me abused and did nothing as a child. Wasn't it enough that she didn't speak or support my decision to divorce my alcoholic husband. Isn't enough that I gave up work on two separate occasions to care for her? No it wasn't - apparently I am lazy I don't care and I am worthless - don't ever listen through keyholes!

I thought if she would go into respite for a week but she is refusing that too.
I am done. I am also about to make myself homeless....and you know what? I would rather sleep on the streets in the wet and cold than live with her any more.
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rest of the stew^^^^^
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Good venting, Jude. Sounds like you are at the end of your rope. And I hear you, really I do. Maybe some great people on here who have been through what you are going through-and lived to tell about it-will also come and support you-this is a really difficult, (maybe impossible) situation.
Your dignity has been shattered, stomped upon, and stolen from you, bit by bit, and also in huge waves of stress. Let's see if together, and everyone here, we can get some of that back for you. There is a huge difference between how we see you , and love you , then, there is the horrendous way you are being treated. That just makes me angry, so angry. There is gonna be an answer that works for you. Wait for it.....
Love from Send
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I will be OK Send. I have put her to bed but I know how bad it is getting because my eating is totally out of control. Don't know why I do it for now she can add fat to all the other insults. its like lets pile sh*t on myself for her!
I know that sounds insane but this weekend has been bad. And no respite in sight - I need to get into the new flat
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First, just let me say, I don't think the Queen of England would be this difficult to serve meals to.
Jude, you have every right to stand up to her (not the queen of England, but your Mum) and inform her that if she's eating sweets on her own, she won't be needing you to cook for her. I mean, you have raised children, through toddlerhood! You say, wasn't this hard? Let her sit with that as you walk away.
If she screams, gets herself worked up-perfect timing-call 911-or dial the emergency number in the UK-tell them your patient has gone off the deep end-and that you are outside until they get there, then you leave. Can you try that?
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There is never any doubt that you will be okay! Just wishing more for you, you deserve better!
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While she is sleeping...sneak some treats for yourself-just do it, enjoy, then get back on some healthier eating. Don't beat yourself up about it. If you are going to slip up, be sure it is on purpose.
Sending some dignity your way....here ya go!
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And of course send when they arrive she will be all woe is me ad meek and mild - I feel like I am lying all the time - let me just go to the garage and scream
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Caregivers all, aren't we all just a little smarter than our loved ones with serious cognitive disorders? Maybe not as devious, manipulative, narcissistic, or helpless, helpless, helpless, but smart when we take a step back? Has anyone any ideas to put into practice so that the patient is not running the show?

I know I could use some ideas.
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