Needing to vent: Our parents are like children.

www.caps4caregivers.org/ · I am going to check this out see what they have to offer us

Baffled,

Neither my husband or myself qualify for Medicaid. His Medicare will not start until he has been on disability for 2 years. They said his disability is above the income limit. He gets 30% through the VA and 100% through Social Security. I just need to get a job. BUT! He can't be left alone. I'm still researching all of this. I havn't given up yet. I'm not only phsically exausted, I'm mentally worn out. I was terminated from my job exactally 2 days after my surgery in April. They said I would be off work to long and they could not hold my position for me. I live in Arkansas. This is a right to work state. We had a major factory burn down. Jobs in this little town are real scarce. The biggest town from us is 45 miles away. Thats to far to leave him alone.

Hello to all: I pulled up this website just browsing around, and find my life being described in the submissions. My situation is not quite what seems to be yours, in that I'm caring for my husband of 40 years, not an elder. He is quadraplegic, bedridden by his own choice. He does have some limited use of his arms and breathes on his own, so he's luckier than most. Almost 5 years now I've been caring for him. This past year, however, my own health started to fail, and I hired some parttime help.

We moved here two weeks ago, and I've yet to find caregivers; I'm exhausted.
I got some comfort reading the submissions, and plan to return to read more.
Thanks..bethie

Here is a website you might try. Seems to work for any City and State. It's what I used to find caregivers for my mom.

aplaceformom.com/

Now, on a totally different subject. I have an extremely bad time with "odors". I gag and gag and sometimes throw up so am pretty useless when it comes to cleanups, and it's even bad on bathroom visits. What does anyone do to help with this issue? I know it's not mom's fault that some of her emissions could classify as hazardous material and I make sure to apologize as I gag.

Any ideas?

Thanks!

Noodlehead,

I found that lemon citrius helps and alot of lysol. I burn a candle at all times. Even when there is no mess to clean up. Your mind will tell you there is.

Noodlehead, My granddaughter is working in home health care. Her little trick is when she has the same problem she puts a little vicks salve under her nose. It helps.Barb

barbees, absolutely great suggestion! It does work. It has gotten rather expensive lately but any brand of Menthol salve will do the trick and costs less than half the 'Vicks' brand. It also works wonders for opening up the breathing passages if the patient needs a little help with wheezing now and then. Did you know that some patients get itchy feet all the time and a good rubbing with Vicks instantly takes care of that? Besides that, massaging the feet relaxes the patient. We Southerners have used it for generations for a multitude of things.

Noodlehead,

all the above suggestions are good & work. I just press my tongue to the roof of my mouth and remember not to breathe through my nose (works believe it or not)

There are a few other options -
1. evaluate & change her diet - her doc or a dietitian can be a good source, or if you care to share with us we can all give you best suggestions. Without knowing what her diet, and meds are, am hesitant to recommend anything

2 there are products out there to cut down on the scent. If you go on line google osteomy supplies

hope this helps,

My daughter has some kind of fungus under her big toe nails. She puts alittle vicks under and around them then puts on some socks before she goes to bed. In the morning it's about gone Barb

Ah yes, that makes sense. A friend of mine is a policeman and does that when they come across foul odors.

Thanks :)

Weird, I posted my response two hours ago and it just showed up now :D Thank you everyone, I'll give all of those suggestions a try. She takes Dopa for Parkinsons and that's about all. We eat the same thing so doubt it's her diet except maybe she gets more air pockets "ahem" because she doesn't chew things up as well without teeth.

I'll experiment and thanks again :)

You can also try to recolonizing her GI tract with probiotics like acidophollis, or???
ask your doc if there is a way they can recommend the right one since there are alot of different ones being marketed right not.
when people get older how they digest changes so who knows what food the culprit is?

cheers for being so forthright about this subject - you are a great daughter

Hello everyone,
This will be long. I have alot to get off my chest.
I am here to let some stuff out. Yesterday we got bad news about my mother's brother. He has 6 months to live. They thought surgery would do the trick, but they opened him and sew him right back up.
This is a strange relationship between them. They have not really spoke for several years. But of course he is my mother's baby brother. It is only them two left.
I do not know what to expect out of Mom. Last month when we found out from the aunt. Mom wanted to call her brother. Well when I called the Aunt said, "UH UH UH UH UH I really dont know. Can you call back?" I said will 10 minutes be ok. And she said longer if you can. She has never informed us of his illnesses before. We always found out from someone else.
But back to Mom, she ws not sleeping good. So I called the DR. and they suggested a Xanax (sp) at night. Now she is not eating to good either and is sleeping at all hours of the day or at least she is staying in her room. She usually comes out and sits with us and watch tv or whatever. I do not know if she is not feeling well or not. She is not one to talk to anyone. She usually keeps everything inside. So I know she is constantly thinking of him.
I did tell her about his diagnosis. Maybe I should not but I figure she needs to know. I think she would have figured something out if we did not tell her.
So does anyone know what signs to look for in my mother so she will not go into a depression or worse. I have never been in this type of situation that MOm was not there to help me through it, now I have to help her :(.
I do not know what to do.
I would appreciate any comments or suggestions any one might have.
Thanks
And All you caregivers are in my prayers.

Roxie,
1) Check that Xanax as to dosage and how often she's taking it. The doctor may have prescribed too much or she may be taking more than prescribed. It's a magical medicine if taken correctly but if too much it can give strange results. Also, there's the possibility the doctor didn't prescribe a strong enough dosage to prevent depression. You probably need to talk to the doctor again to let him know how she's behaving. People don't sleep well if they're depressed and people get depressed when they don't sleep well. It's the old chicken and egg problem.
2) Find any and every excuse you can to get her out of the house for walks, rides, anything, just get her doing something outside the home if only for a few minutes several times a week. Change her daily routine! Do the two of you ever go out to a long lunch? Does she go grocery shopping with you? Does she drive on her own?
3) She may keep things to herself due to feeling that no one cares what's she's thinking or feeling. Try to get her to talk when there's only the two of you around. Don't demand she talk to you, just ease into it by telling her you're concerned and would like to know if there's something you can do to help.
4) Two families under one roof can be difficult some times. Make a point of including her in conversations and activities, it will be worth the effort. The effort has to come from you to make her feel wanted and part of the family.

You didn't say if it's her home, your home, if there's grandchildren around, if it's noisy or usually quiet, her age, her general health, etc. Her immediate surroundings are extremely important. If her behavior changes to the point you notice it and doesn't correct itself after trying the above or anything else you can think of, it's time for a doctor's visit to see if he/she can come up with something to help.

Baffled obviously isn't all that baffled. Great advice, all the way through.
Carol

Baffled Thank you for responding. You do know what you are talking about.
Here is the answers to your to important questions.
We just started the Xanax it is only 1/2 of .25
She fell and broke her hip two years ago in her home and that is when she came to our house. Her short term memory has declined. She doesnt remember taking her medicine or that her homemaker was here for the day. In fact over Christmas she did not know her own grandson.
She never knows what time of day it is. She thinks it is morning after every nap.
She will not get out in the winter time because of the cold. My husband and I took her out shopping one day after Christmas and she was in bed for three days because it took a toll on her.
She has a daily routine that she has done for years even when she was at home. It seems that when it is broken she gets more confused. We do not go out to eat because most of the foods she can not eat. She chokes easily. All she does is just sit here with us (my husband and I). My daughter lives with us until her husband gets out of the service in July. Which that might change here soon. She is talking of movig out now instead of waiting until July.
The house is quite we do not have much traffic coming through.
She is the type of person that keeps things to herself and it is very hard to get it out of her. I have tried over the years. She has been this way ever since I was little.
She knows she is loved around here. Otherwise she would not stay with us. Believe me she would let us know that. She can stand her ground. She is little but very might.
I was talking to my daughter last night about her. I ask if maybe my daughter could get granny involved in puzzles again. This way it would be someone else instead of me all the time.
I need to talk to my son. He does not come around unless it is the holidays. I do believe he needs to be more involved with her. I know every one has their own life but sometimes someone else needs you also.
I am not asking him to do much just come and visit with her once in a while. I do not ask him to sit with her because I always get "Well I do not know what we are doing or Well my sister is right there or I will have to check with my girlfriend" I get tired of the excuses so I do not ask any more. But for mom's sake he needs to help with her by entertaining her. At least I think so.
Thank you again baffled. I always need to see things from someone's view instead of mine all the time.
All you caregivers are in my prayers.

Roxie, have you tried or considered taking care of her medications....as far as giving them to her at the prescribed times? She may get upset about that, but maybe if you explained that you loved her very much and wanted to keep her around as long as you can and you know sometimes she forgets to take her medication that may that would help.

I take care of mom's meds, as far as putting them in the weekly pill box, but have found that sometimes she not getting all of pills out (she almost blind now), so I am going to have to start checking the pill box after she takes her medication to make sure she took her all.

Roxie,
You really have a difficult situation. You can handle it, but it's going to take a lot of your time and effort. I laughed out loud when I read the amount of Xanax she's taking, you might as well pass the bottle under her nose and let her breathe the fumes. I'm not a doctor, don't want to give you any advice on medications except I have a great deal of experience with my mother on Xanax for 30 years and it seems to me your doctor should rethink that dosage. A full .25 would be a small dose and maybe half of that will help her, but only you know as you're the one there. If you don't see as it's helping her, please check back with the doctor to see about increasing that dosage. I have never believed in over medication but I do believe in giving enough to help them. If she's sleeping a lot in the day time, that MIGHT mean she's not sleeping well at night. It's amazing the difference it can make in a person who sleeps well as opposed to those who have a rough night. Never hesitate to call the doctor's office and tell them what worries you about her behavior and ask about her medications. Most doctor's don't spend much time reviewing a patient's meds unless they're asked.

As to your son helping out, don't count on it. I've found that family members who have to be asked to visit their elders aren't that helpful anyway. I love the idea of getting her back into puzzles. That would stimulate her brain, get her interested in 'doing' something and might impact her entire attitude. Go for it! They want something to do WITH someone else.

At one time my mother drew up in a knot (as they say around here) and lost interest in doing anything because she couldn't do what she wanted to do. I bought a cheap coin folder for nickels. Took it down there, dumped her change jar on the table and asked her to help me find the right dates and mint marks to fill in the folder. She balked, so I started doing it. She finally joined in, got excited about it and ended up sending me for more folders and more nickels and over a period of time filled out one of those folders for every descendant she has - 17 in all. Then she wrote their names in them and stashed them away to be given to them after she's gone.

After that was over, she wanted to do some crocheting but claimed her eyes were too bad. I got her a super bright light for beside her favorite chair and now she's filling up the community and family with her famous pot holders. I'm not saying she doesn't get depressed sometimes, I'm just saying caretakers have to poke around making suggestions and trying to get them to find an interest in something to do with their time. Those puzzles would be a wonderful place to start with your mom. Don't give up if she rejects your efforts at first. Just start working on it yourself then asking her to help find a particular piece (like a corner) and see if that sparks something in her. Think outside the box, maybe a child's 3-D puzzle might intrigue her. The trick is doing something with someone, at first anyway.

When you say she stays in her room a lot then sleeps a lot, that really bothers me.

One of my kids bought me a throw pillow with these words on it, "Have you hugged your Mom today?" I smile every time I see it as it is the best reminder for me that my Mom's needs are far more than food, shelter, and clothing. Sometimes when I get totally frustrated with my Mom, I yell at that pillow, "No, I have not!" Then I smile and calm down.

Hi Roxie I know how you feel about going to walmart,there are times I go out to a store and walk around for hrs just so I can feel like I am a human,I am single so I dont have the help of a spouse and I get feeling so guilty for what I feel that I close up and I know thats not good but it is so hard to see the person who raised you now cant hardly do anything I wish I had more strength

It's horribly painful to see our once-capable parents diminished in such a way. I think part of the pain is that we really have mortality pushed in our face - their mortality as well as our own.

Getting away with people - even people you don't know, if that helps - is good. Everyone needs to get away from the incredible stress of constant caregiving.

I loved Baffled's comment about shouting at that pillow,and then smiling. It's amazing how we find our own ways around these things.

You are all amazing. Just keep sharing ways of self-care, as well as good solid information. This site is showing a lot of both.
Carol

Thanks Carol for push I am so glad I found this site I have only been on it today but just in the few hours I have I feel hope just talking to others that are in the same situation and really understand

Hi Baffled,

I love the idea about the coins and will use it for my mom....
I really appreciate it when there is an idea I can use.. you made my day (and my mom's too)

C

Cat,
You're welcome. Even if the suggestion doesn't work for some, maybe it will get others to thinking of things their 'patient' might like. My mom couldn't push the nickels in the holes, but she laid them in the right place and I pushed them in for her. A note for those who aren't in to coin collecting: The earliest nickel folder you can get will probably be a waste as there aren't many of those nickels still in circulation. The latest one may not have enough holes for years in it to suit you, so I'd suggest starting with the middle one, probably 1962, the years that are still plentiful.

I'll make you all a deal. If you do that with your 'patient' and run into trouble finding some years or mint marks, let me know, more than likely I might have one to give you to finish it off, especially from 1960 to the present. Before that is iffy but I might have them. They certainly like to complete their project and it could get frustrating for them to not find them all. You probably won't find a 1971-P in change but I'm sure I have some I put away years ago. Just let me know. Be prepared to haul many rolls of nickels home. :)

Thank you everyone. I like the coin idea also so I hope I can find them.
My mother's brother (who has stomach cancer) daughter came down today. I guess it is worse than expected. The cancer is incurable. He has choices 1. do nothing and live 6 months, 2. Do a 2 week session of chemo to shrink the tumor enough to help with the pain, 3. Do a full set of chemo. and live 11 months. He has not decided yet but is thinking about the 2-week session. Mom did not hear everything we talked about, but we told her he was doing ok. Which right now he is except being really tired. They started him on an antidepressent. We all had a good time. I believe it was good for all of us. We had not talked to her in ages. When me and her get together all we do is laugh and that was good for us both.

Yea the Xanax is a very small amount :) but she is sensitive to drugs of any kind and she only weighs 82 pounds. That amount for me would not do anything at all to my system.

My daughter is going to move out on her own in about two weeks. So I will lose that little help. She does not do much but does help some. I will miss her around here. It is a rough time for me. To lose my uncle which I was close to at one time, have my daughter move out of the house, and then to see my mother suffer through the illness and death of her baby brother. This year has not started out to good for our family in the health department.
But we do have things to be greatful, do not get me wrong. Everyone's else health is fine.
Take care You guys are in my prayers.

I will keep you and your family in my prayers,

Cat, I second the motion on the brilliant thinking Baffled used with the coins. It's certainly one to try for many elders and I'm tucking it away to suggest to others. This group is amazing.

Carol

About the coin collecting. You can go for any coin, but the dates and mint marks on dimes are extremely difficult to read for the elderly, pennies are usually nasty and just get worse as time goes by, unless they're brand new, and those will get nasty in time after being handled, but don't overlook quarters if they're easier for them to handle. It's a small investment for the enjoyment they might get to say nothing of the thrill of those who inherit them from a beloved family member.
I'm thrilled to read the responses from those who plan to try it. But, I'm about out of ideas for my mother, so I'm depending on you guys to come up with something that might intrigue her now. :)

We have a little surprise for her this Spring. She's a lifelong flower grower, that was her life and her yard showed it, but she just can't get out there to do it anymore. So, we have these huge plastic barrels cut in half, holes drilled in the bottom, we're gathering up potting soil now at my daughter's house and when the time comes, we're taking her outside with her oxygen and a chair and going to let her plant bulbs and flowers until she's exhausted if she wants to. It will be easy for her in that soft potting soil. It's exciting for her to check every day to see if anything is up yet. We'll also have some veggies for some of the pots as she loves to watch them grow then pick them at just the right time. Also, if she's up to it, she'll be going with us to the local farm supply store to pick out her own plants and bulbs. Getting out of the house is very important when they feel like it.

It's a long time until Spring so if you have other ideas, please let me know. I'm drawing a blank, that is, I'm baffled as to what to do next.

Baffled, what a great idea! When mom and dad lived at another house before we moved them closer to family several years, they had a fish pond that was just beautiful. Me, my sister, and a friend of hers did the digging and laying the plastic and things like that. My sisters friends did the waterfall. And as mom loves flowers she did the flowers and things like that. Mom loved to sit out on the patio and listen to the to the waterfall.

So this spring, I mentioned to my sisters how much mom had loved that and maybe we could get one of those that we just set up, because I by myself was NOT going to do the digging and things like that, and they thought it was a great idea. We got her one for Mother's Day and set it up right beside the patio (the patio is a covered one). I took mom to get whatever kind of flowers and herbs she wanted. Mom planted her flowers and herbs in clay pots. I set them all around her fish pond. Got stepping stones and different little statues. Mom had a wonderful summer just sitting out on the patio and listening to her waterfall and watching her flowers and herbs grow.

Thanks for idea about growing veggies. I'm going to use that idea for this summer.

I know I've said it before, but I just have to say it again, I just love the site!

The veggie garden is what we did last summer. We found some objects that would hold soil and set them up at my mother's level for her to work out of a wheelchair. Every day she would go out and check out the veggies. Then when tomotoes were ready to pick (which is her favorite) she would help us. We would set a wagon by her and she would place the picked tomatoes in the wagon.
she also love to can, so last summer I was canning everything I could find. I would have her help me put the veggies in the jars. Then I did everything else.
My mother has always enjoyed quilting,but last winter was very difficult for her. She was upset with everything because she could not quilte or sew any longer.
My mother is such an outside person. She use to be outside everyday, so the winter months are hard to find things to do. I will keep thinking hopefully I can come up with something.
Take care

I do the same thing with gardening too, we have fruits & vegetables, but I also have planted lavander, herbs and a butterfly garden in the same nook as the bird feeder / hummingbird feeder - one thing that you can do if you get ahold of a kids wagon, is make it a movable garden - either adding a box or just the pots. That way you can bring the garden to her - inside or out depending on how she is feeling and the weather. My mom taught me how to garden, as her mom taught her.

One thing my mom loves is if I make something that used to be a specialty or a favorite that she cooked. I can usually get her giggling with the memories of what happened with that particular meal, or occasion. Especially if it is one from the garden that her own mom used to make.

Carol, would it be possible for you to make section(s) on the site specifically for activities & receipes?

Baffled, I will be posting some coin questions to your wall after I get our old coin box out ..... do you know if it is ok to give them all a quick rinse with something like dishliquid, vinegar, etc that will make the sano for handling? I doubt that we have anything too valuable to clean.