I moved my mother into my husband's and my home in November of 2005. She had fell at home and broke her hip. She was not able to live on own any longer anyway. This gave us an excuse to move her into our home. She was a very independent woman before the accident, but things have changed in the last few months.
Her short term memory is not good at all any more. She can not wheel herself around the house any longer.
She just got out of the hospital back in June about a 2 week stay with a blockage in her colon and then she contracted VRE. That is not fun to have in the home. I felt so sorry for her.
I am starting to have crying sessions it seems like every other day anymore. I do not see my mother any longer I see a person declining quickly. I am feeling overwhelmed and I don't think my family sees it. I have told them I need to get away for a few days, but that never seems to happen. No one has time to watch or be with mom except me. I am the only child so this is all on my shoulders. Her brother is not any help they have not spoke in several years now.
I do not know if I am just going through a stage or if I am starting to get depressed. I am with mom almost 24/7 except when a homemaker comes in daily. A person can go to Walmart just so many times to get out of the house. I seem to have lost my friends because I can not get together with them anymore.
This on-line discussion is a life line for me. This way I can communication with people and see how they handle different things that come up in their caregiving also.
So if anyone has advice please let me know how to get myself under control.
Losing Control
Brenda, I'm so glad you and your Mom will be home at last. I'm sure she'll continue to improve, and probably be less confused when she is back in her own place. It will be so much better for both of you.
Roxie, we haven't met yet, I'm Jill. I'm an only child taking care of my Mom. She is 88, wheelchair-bound, fairly healthy but fragile and not very strong. The hospice lists her under 'adult failure to thrive', which is good for us because we get hospice help even though she isn't suffering from anything terminal other than old age. I work and we have a great caregiver for while I'm gone. Also am deep in debt paying for it, which you can learn about by reading some earlier posts! That, and having no family and very little outside help, are my big stresses. But anyway, besides all that, I'm also a nurse. I read that your Mom had the pillcam done. I don't have any words of wisdom about that in particular, but I do think that if there were any bad results, the doctor wouldn't wait until next week to tell you. I can't imagine that if something needed treating that he would wait. Of course I don't know for sure, but that's been my experience. I know it's hard to have to wait, but I just think the odds are that the results will be ok. I'll definitely keep you both in my prayers.
I noticed that Brenda mentioned a wedding--is it you, or a family member? Fill me in!
I didn't get to the dentist today, Mom didn't feel well and wanted me to be with her rather than my friend who came to stay. So that will give me an outing to look forward to another day! And I have an appt. with the tax attorney Friday who is trying to get me out from under the IRS and stop them from trying to take my house. This country has got to change the way it treats our elders. Family members are losing everything trying to take care of parents at home rather than putting them in nursing homes. My Mom has nothing but a small SS check each month, and I'll never live long enough to get out of the debt I'm already in just to keep her at home with me. But I promised her I would never put her in a nursing home and I won't. So, we do the best we can. Of course she doesn't know how bad things are financially, and she won't, because it would worry her to death. So we just make the best of things and get on with it. I'm so glad I found this website, I feel like I have friends here who really understand exactly how it feels.
Anyway, it's way past my bedtime and I'm gonna hate it when 630 rolls around tomorrow. So goodnight everyone, and God Bless.
Jill
We are coming home!!! 5 weeks - 3 hospitals and 2 brain surgeries later! My mom has really improved since the last surgery. She can walk 200 ft! get & in and out of the chair. That is definitely enough to come home. She is a little confused, but the dr's say that should continue to improve. I know she is so glad to be coming home.
Jill, your post brought tears to my eyes. When my mom and I were talking one day, she told me that she didn't want to die because she doesn't want to leave me alone. It broke my heart. You sound like such a caring person; I hope thing will improve for you soon.
Roxie, Good to hear from you! I hope your mom's test goes well; waiting is always the hardest part. Are you all ready for the wedding? Stay in touch.
Blessing to you all,
Brenda
I'm sure your mom will get more comfortable with the chair and eventually try it in the house.
Waiting for test results to be explained is painful. It's normal to worry, but try to relax a bit and know you will deal with whatever it is.
Take care of yourselves, all of you caregivers. That's important.
Carol
I see we have new caregivers on line. Welcome!
I hope everyone is hanging in there. I have not had time to read all the post, but I am thinking about each and every one of each day.
I need to let some thoughts out.
Mom had a test called the PillCam. The results take forever. Yesterday I finally called the doctor to find them out. Well he wants to see her next week. I know I am worrying to early. Everything is going through my mind. I keep telling myself not to worry until we talk to the doc. I guess I am just a worry wart by nature. I just hope everything turns out well.
Mom has got her electric wheel chair. She is a little intimadated. At first she was on it all the time playing around then ran into some furniture (didn't hurt a thing) and now she will not ride it in the house. Therefore we take her outside and she loves it. We have a garden which she is a garden person. So for her to be able to pick a few tomatoes makes her day. She reminds everytime when it is time to pick. I just hope she will try the chair again in the house. Maybe after the wedding this month I will have more time to play with her to build her confidence.
I just hope the test results aren't bad.
Everyone hang in there I am thinking and praying for every caregiver.
Anyway, I have gone back to Mom's original pain meds which she had developed an allergy to. Gave her 1 last night, got good pain relief and not much itching. So I think we'll try another tonight along with benadryl at the same time, and hope for the best. If the itching stays under control, I'll also go back to giving her 1 at bedtime which helps her sleep, and will solve that problem as well. Here's hoping it works and we can both get back on a regular schedule. Then I know that the quality time we need together will return, once she is well-rested and pain-controlled. We'll both be happier! In fact, we already are. Right now, I'm in my recliner next to Mom's bed. She is napping with my cat Sophie. Tomorrow is my day off and one of my friends is coming to stay with Mom while I go to the dentist. Then work Thursday and off Friday. And I don't even think we're in line for any more hurricanes at the moment, which is always a plus! Mom has said she sure would like to get out of the house, so if she is up to it maybe we'll go out for a little this weekend. The only place she has been in months is to the doc a couple of weeks ago, and that really wore her out. It's kind of hard to come up with anything she'll enjoy because she is usually out of bed for just a little while at at a time. Bless her heart, she is as sharp as a tack and still wants to be able to do everything that she used to do, but just can't anymore. Can't walk, can't see, can barely be out of bed for more than a few minutes. I'd give anything if she could just enjoy her life. She told me last night that she's trying her best to stay alive as long as she can so she can keep helping with the bills with her little Social Security check. I almost cried. I told her I want her to stay alive to be with me!! Sometimes quality time means just being happy together, and that's what I want more of. Every now and then I have to remind myself to quit being so crabby and impatient and SELFISH. So my goal is to enjoy each other as much as possible.
And on that note, I think I'll go fix a plate for dinner. Thanks for the good thoughts, and hope your Mom is continuing to improve.
Jill
Carol
Your evening routine sounds a lot like mine. There are times that I think my mother plays a little game to see how many times she can get me to get up in an evening! I know that I am so very fortunate~ my mom sleeps like a baby, and her walking is improving daily since the surgery! When I feel sorry for myself, I think of all the caregiver (including you) who have so much more to bear that I do and I kick myself for that self pity. I pray that you and your mother will have a peaceful night and that all caregivers are given the strength to carry on!
God Bless!
Brenda
Brenda, I make that same promise to myself over and over again, to spend more quality time with Mom and let the rest just wait. But I tell you, when I get home from work, the only thing I want to do is change my clothes and sit and be quiet. You have to realize that even though Mom really likes our caregiver, I am her very favorite person in the whole world, and her day revolves entirely around me coming home. So she is real happy and I am usually not so much. But I try to put my normal impatient self on hold and be the daughter she has been missing all day. Then pretty soon we're alone and my other full time job begins. It's pretty hard to come up with something that we will both enjoy when she is usually feeling pretty poorly to begin with, can barely sit up in her wheelchair and has to be put in bed, then back up in about 5 minutes to the bedside commode, then back in bed, turn me on this side, no, turn me on that side, can I have something to drink? It's cold in here, get me an extra blanket and my socks. If we are watching tv, she can barely see or hear it so I get to explain it all LOUDLY to her. If I get something to eat (she has already had her dinner), she will wait until I sit down to eat it before asking for something else. Which means my dinner gets cold while I get whatever she asked for and then feed it to her. Then I will sit down to my cold meal, at which time she will want to get back up to the potty, when she cannot possibly have to go, but up we will go, and on and on and on and on....... She still hasn't slept in several nights, but I give her pills to try and instead of closing her eyes and letting them work, she keeps talking to me about what's on tv (so I turn it off) to what am I doing, am I in bed yet? It's just like an endless loop. But when I quit with the poor me, I really know that all of this must be a million times worse on her than me, and then of course I feel guilty. But that brings me right back to the fact that I'm doing absolutely all I can for her, trying to keep my head above water and keep the IRS from taking my house, and going deeper in debt every month so much so that I will never ever get out from under it. But I can't let her know any of this, so I put on my happy face, and start over again every morning, just like I know all of you do, too. I'm so glad I have you to let me whine!
Well, guess I'll put the mattress on the floor and hope that at least one of us can sleep. Please send good thoughts and prayers, I could definitely use them!
Love to all,
Jill
PJ I am so glad you got help with your situation often it feels you are banging youe head against and want to yell PLEASE LISTEN TO ME we should not have to be so aggressive to get services we are entilted to and truly need. B renda that is a good idea spending restfull time with them I did get some board games for us to do maybe once a week
Glad to hear that all is well with you and your mom. I usually visit the site most days - things are ok with me. I like what you said about remembering to enjoy your mom's time with you. It is a good reminder for everyone. I am blessed because although I have no help - it has forced me to prioritize - usually Mom time wins out over laundry or dishes. I still do get many challenges when I take her with me on errands - but then again, I do not take the stupidity of senior discrimination very lightly. It is funny how society's expectations of where it is appropriate to take a senior are out of whack with reality.
As far as Home Instead, and other services - It is wonderful thta you have found a service that helps you. However, Home Instead and other companies like them are franchises so it is important to remember when telling everyone your positive experiences that each Home Instead is run by someone independantly - and to evaluate each branch accordingly. A sad comment about those agencies though is many of us really can't afford the fees that they charge for services, even from the unlicensed non-medical help.
Have a beautiful day - you are doing an incredible job of taking care of your mom.
Thank you for your concern! I am so glad that you are getting some help with your mom! Navigating the elder care system is like trying to sail a ship in the dark; I'm so glad you found help. If you are looking for a caregiving agency, I would definitely recommend Home Instead. All of their caregivers have criminal background check and are bonded. They work very hard to get the right "fit"; sometimes I think my mom likes her caregivers more thatn me!(lol)
The shunt revision was a success! She was up walking yesterday (300ft)! I am hoping that if she continues to improve, she will be able to come home the end of next week. It still bothers me that I had to figure out that there was a problem with the shunt and not the "professionals" at the rehab hospital.
Today at the rehab, something happened that really hit home with me. They have a devotional service with the hospital chaplin on Saturday afternoons. A man who has just come into the hospital with a spinal injury was there with his family. His little boy was about 7 years old. He had the biggest smile on his face and could not let go of his dad. It was apparent that he was just happy to be with his dad no matter what his condition. It kind of smacked me in the face. I spend so much time trying to "organize" everything for my mother. Give her a bath, dress her, get her to dr appts, etc, that I don't really take time to enjoy having her. I made the decision today that even if the laundryisn't done or the house vacuumed, I am going to make a point to spend some quality time with my mom every day. I guess that saying that a little child shall lead us is true.
How is everyone else? Austin? bwthrs? Roxie? Cat? We haven't heard from you for a while. I hope that means all is well!
All the Best,
Brenda
I, too, thank God for your "guru." Is she part of your social services network? You are fortunate to have found someone who knows your local resources so well. Every county in the country is different, and of course every state is, too. My state doesn't have "Cash and Counseling" yet, but a neighboring state does. I hope it won't be too long before that is a national program. It should be.
You are making huge progress, Jill. Yes, every elder needs an advocate, as do caregivers! Keep coming back and sharing your progress. You help all of us as much as we can possibly help you.
Take care,
Carol
I met with the woman I call my 'elder care guru' yesterday and signed some papers which we hope will soon provide Mom with 5 hours, 3 times a week, of cna care, as opposed to just respite. Also she has ordered 'consumables' for us: liquid bath soap, lotion, wipes, chux, pull-ups, and I can't think what else. We discussed the Cash and Counselling program, and I learned that my county doesn't have it. Not sure why. Also am looking into 'share of cost', which would be less expensive for me. Unfortunately they would not let me use my current caregiver, must use an agency due to insurance, liability, etc., which I understand. But she assured me that if the caregiver they send does not 'click' with us, they will keep trying until you find a good match, not that I expect that would be a problem but of course it's definitely a possibility. Also she told me to re-apply for food stamps as $10 a month won't even cover the gas to go to the store. This woman has been such a blessing, she knows pretty much everything about what is available and all the details. I'm a nurse and fairly intelligent and aggressive in trying to get Mom all the help she is entitled to, but we are now 19 months into this and have just now found someone who you can actually meet with in person who is so kind and knowledgeable and interested in helping. It is just unbelieveably difficult to get anywhere with the red tape involved, not to mention that even if you can find a program which has the help you need, there is always a wait list, and no funding anyway. I hate to think what happens to seniors who don't have an advocate. Thank God I found this woman who is able to help us so very much. I also thank God for this web site, where I have found new friends who are in the same boat and who can share the tears, and even some laughter. Also you are a great support as well. And I have also found good specific information on here, such as the C and C program, even though I can't use it. I have been telling everyone who might need it about this website, including my 'guru' and our hospice nurse. So thanks to everyone on this site, and hope to hear from some of you soon.
Brenda, how is your Mom? I've been worried, haven't seen a post from you since you said she was having her shunt revised.
Austin, is your husband home? How is that going?
I miss everyone, and continue praying for us all.
Jill
I'm glad you found some help. So much is up to the state you live in. That includes nursing home quality. I am fortunate to live in an area with good care homes. None are perfect, but ours are good and getting better. My email inbox tells me there are many states and counties that are way behind the times. That frustrates me, and all of those involved in the culture change movement for nursing homes. Change will be slow.
Getting financial help to keep an elder at home needs to be a priority. It's cheaper, in the long run, for Medicaid, but it's taking way too long (as you know - I'm preaching to the choir) for that to take place. You are getting organized and getting as much help as you can. Keep making contacts. Hospice is terrific and will be a huge boon for you.
Take care,
Carol
Jill
If your county social services saw the mess, he'd have to get some things done so that the health hazzards are cleared up.
I like what you said about eating an elephant. That's how we get through many things - one bite or one step at a time. You are a champ at that!
Carol
Carol
Jill
if you are having no luck with sleeping meds for your mom and self why don't you try ginger tea, white noise (fan works fine) and informal hypnosis - which is something you can do yourself - the bonus is that it will help your stress level as well. This worked for my mom.
Just have a cup of tea, get her comfortable at her usual bed time, snuggle up and start stroking her arm & talking in a soothing voice. From experience, I have learned that meds for sleep can have different effects that the one you want. Ginger tea, made from fresh ginger root is a great natural sedative and has no side effects that I am aware of. (of course ask your doc first - but you can also check for interactions with her meds online)
To make ginger tea - get 1 oe 2 large *fresh* ginger roots from grocery store - grate it - peel and all into approx 4 cups of water in a pot (try to use enamel - not teflon) and after bringing to a simmering boil - let it go until the water boils down to 1/2. At that point, if your mom can have sugar, add light brown sugar - 3 TBL and let it go until it is at 1 C. liquid. Strain through a coffee filter - and put in fridge. Use 1 to 2 Tsp each time you want to make a cup of tea - it will be strong and you may want to add more sweetner to taste.
hope it helps anyone out there.
As far as Mom and her not sleeping, I tried her on Lunesta a couple of years ago and I think it worked for a while, then not. I'll get some samples and give it another go. Also, she has never been on any anxiety meds except 1 mg ativan prn, so maybe I'll see about trying the valium for sleep. At this point we are both ready to try anything! Her doc (who makes house calls, can you believe it?) who is also my doc has the same feeling about keeping her comfortable, whatever it takes. Mom is still all there mentally and doesn't like to feel goofy or fuzzy, or 'woozly' as she calls it, so hopefully one of those will let her sleep well without a hangover. Keep those fingers crossed! And I'll keep you and your Mom in my prayers that she continues to improve and can come home soon.
Austin, I know what you mean about rearranging the room to fit the hospital bed, potty chair, wheelchair, etc etc. When we knew Mom would be moving in with me after the rehab last year, I had to cut a hole in the wall between her bedroom and bathroom so the wheelchair could fit. Put in a new sink with just a countertop and no cabinet underneath, and a raised toilet and some serious grab bars on either side of the toilet. Unfortunately, she has since become unable to get onto the toilet in there and instead only uses the bedside commode. Also can't get in the tub so has all bed baths. Also, I have recently moved her into the den because she wants me with her all the time, and that way I can still do things in the other rooms and she can see/hear me. I think I told you I sleep on a little mattress on the floor beside her bed, and then move it during the day. The den is very small and things have to be moved in and out as needed. So my mattress is standing on it's side right by my front door! But oh well, you gotta do what you gotta do. Anyway, good luck with the re-doing. It may take more than one try to get things in the best place, sometimes you have to try it out and discover what might work better.
Carol, remember I said I hardly slept last night but it wasn't because of worry? I wasn't sleepy at all today! So I will continue to believe that it's a God thing, as I call it. I know he won't let me down.
Thanks again to you all. It feels good to know people are out there who know and care.
Love to all, Jill
The surgery went just fine. I have never heard of drive through neurosugery, but that is what she had! They used local anesthesia, opened the first incision, rooted around in her head to shorten the shunt, then sewed her back up! She seemed better when I left tonight. Thank you for your thoughts and prayers!
Jill, I'm glad that you are feeling more at peace. I think that our emotons often transfer to out parents. I know that when I am upset (even if I don'tsay anything) my mom is more agitated. Have you tried Lunesta for your mom? or yourself? I take it, and it works pretty well with no hangover the next day. I give my mom 5 mg of valium every night and that really makes her sleep like a baby. Once in a while a nurse or doctor who doesn't know her will question it. Like it is a big deal when an 86 year old woman who is pacer dependent and now has a drain in her brain takes a valium regularly. I don't think addiction is a problem. I believe that whatever it takes to make elderly people comfortable and contented if the right thing. I'll be watching the news and praying that the hurricane misses you!
Ausitn, I'm so glad that YOU feel better about your husband coming home. Maybe if he realizes that you have some support , he will act better! I'm so sorry that he is unkind to you. I know that is heartbreaking, even if his disease is responisble. Hang in there! We will be here for you.
All the best,
Brenda
Good for you isn't it sad that the pts. family have to tell the docs how to solve problems- I am so proud of you that you did the research with all else you have on your plate-they say if you want something done ask a busy pertson to do it, PJ this sounds stupid and I got the idea from the N.H. and I used it when I worked would it comfort your Mom to have a stuffed animal to hug at night-one of the ladies who usually is so agigated at the N.H. had a doll she was holding and talking to it and was so calm the other day. I'm worn out from moving furniture in my husbands room -our son took apart the reg. bed so now I have only the hosp. bed and fixing up the room so he has room for his motorized w/c and commode etc. This time I will have all you ladies to connect with I was not on this site when he was home before. Mlv hope you are allright and PJ hope you are allright with the storms comming your way- we may get some bad weather here in the north east but nothing compared to what you all are going through.
Carol, thanks for the moral support. I'm still trying to gather up all the paperwork. Meant to print out 3 months of pay stubs at work today and was so busy I totally forgot. Now it will be Thursday before I'm there again. Oh well, I guess another day or 2 won't matter at this point. You know, I've been having a terrible time sleeping lately, thinking and worrying about everything. But last night, even though I kept waking up, I was happy and not worried. Don't know if God was letting me know it will work out, but it makes me feel good to believe it so I do.
Jill
Your message really hit home, I just came home to let the dog out because mymother is going back to the or for a shunt revision! When I got home last night, I was so frustrated that I spent a couple of hours online researching complications with shunts. This mornign I was determined to get someone to listen to me. I called the neurosurgeon's office this morning ready to be brushed off. Lo and behold, he came right to the phone, pulled up her CT scan and said "you're right (that's a miracle!) the shunt is too long." They are going to fix it this afternoon. The frustrating thing is that I, a high school English teacher, had to figure it out instead of all the medical professionals at the rehab hospital! Pretty scary.
I'm glad that they have found a drug that will help your mom's nerve pain. Does she have RSD? I know that is a terrible disease to deal with. Good luck to you. I hopw that this new med will continue to help and that you get some rest.
All the best,
Brenda
Getting professionals in the fields where you need them is a good idea.
Blessings,
Carol
I spent a long time this weekend getting all the financial info I need for the tax attorney I am using. When I saw in black and white how much money goes out just for the basics, (food, meds, gas) I could hardly believe it. No wonder I'm in such a deep hole! But I'm doing my best, and hoping to get a second job soon, and as I've said before I have complete faith that God is in control and things will work out somehow. I pray very hard every night, and am fortunate to have others praying for us as well. So good night everyone, will check in tomorrow.
Has anyone heard from Marylyne? Hope she is ok. Living in Florida, I've had to evacuate several times in the past 10 years, and it's no fun at all.
Jill
Jill
Thank you for your support. Tonight, I am so frustrated that I could scream! My mother's condition is worsening, and I seem to be the only one concerned about it. I noticed that her right hand was swollen and insisted that they do a doppler. Sure enough, two blood clots! My brother did get the neurologist to order a CT scan to check for a subdermal hematoma, and it was "normal". I think that the shunt isn't functioning correctly; her symptoms are the same as before the shunt went in. They were much better a few days ago, then quickly deteriorated. The neurosurgeons PA pushed on the shunt site and said it was "fine". Something isn't fine! The hospitalist who runs the rehab said it was a 5mg valium that she took! She has been taking that every night for 5 years. It is so frustrating when the doctors don't seem to take any interest. Tomorrow, I am calling her internist, who doesn't practice at this hospital, and begging him to see her. He is wonderful and was the only doctor who could identify the drug reaction that almost killed her 3 years ago. I swear the more "ologists" that you have the worse off you are. I'm sorry to go on like this; I just need to blow off some steam. Again, thank you for your support.
Brenda