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
My heart goes out to you. Would your Mom be able to get medicade it is suppose to be available for those who have no resourses of their own-from what I understand an adult child is not responsible financialy for their expenses it is more complicated when the person in need is a spouse. Unless she had a lot of money and gave it to you durning the look-back period- which is not the case for you she should be able to get home care- in our case my husband is on medicare and we get very limited help for the first few weeks when he comes home from stays in the nursing home when I say it is not enough they tell me to get medicaide and we would all the help we needed, you can not keep up what you are doing your health will go down the tubes. I and all of us on this site do very well understand what you are going through-it is more than you can do.You want to keep her out of a nursing home but realisticly that may be what needs to be done-I hope I don't sound hardhearted I am almost to the point that I can no longer take care of my husband-part of my problem is his bipolor besides his physical disability. In our county there is an office for the ageing which will provide low cost aides for someone in your shoes- we can't get it because we both get pensions besides S.S. but you would be able to get it I am sure. I am sure the others on this site will be able to help
I got cut off. I would sugest you call your Dept. of Social Services and ask to talk to a Social Worker about your situation or the Dept. of Health in your county. I would keep on until you get someone to help you. You can't keep up working all day and caring for her every night. Keep on this site you will get much support- it has changed my life-getting support and encourgement and input from others-it is overwhelming and so welcome to fianally find others that understand -I felt so alone for so many years- friends try to be helpful and would ask what they could do but I am independent and would ask them to call me from time to time but they thought I was too busy-I guess and here when you are down and sad you can come on even at 3 am when you can't sleep and share you feelings good and bad. Please keep in touch on this site you can vent all you need to. God bless -looking forward to talking with you soon.
I have called everyone there is to call, and no one can offer me any more than the few hours I mentioned. The only other thing, and you have to get on a waiting list for it (which I did today) is a program where, if you qualify, they will send you $106 per month to help with caregiving expenses. That would pay for 1 day, but I guess it's better than nothing. I may be getting a second job, but would then have to find a second caregiver to cover the extra hours, and a good one is hard to find. Plus most of whatever I would make would be paid right back out to them, but at least there would be a little extra left over for us.
My Mom has been having trouble sleeping recently due to not getting a pain pill at bedtime any more. She has become allergic to the last 2 kinds she had, and now there isn't much else to try that isn't in the same narcotic family. So she is hurting more while she is awake, and she is awake more because of the increased pain. Tonight I found a sleeping pill that she used to take but I had stopped giving her because it makes her talk in her sleep all night. It was the last one in the bottle, and she was desperate for sleep, and sure enough she has been talking in her sleep for the past hour. It is very upsetting for both of us. I hope someone can come up with something that she can take, either a different pain med or a different sleeping pill. She is too old and frail to go without rest, and so am I!
I have been where you are. It is not easy and I learned after much heartache how to manage. My situation was complicated, but like you only had myself to rely on. Here is what I have found out - everyone who has not experienced what you are going through will tell you the same things that you have already tried. Everyone means well, so don't despair when you read things you already tried. And don't let anyone push you into considering a nursing home if you dont' want to. I can tell you one thing - I got through a horrific time and so can you.
if you want to check on meds - look at PDR or docguide.com - - but only an hospice NP or doctor can give you advice on meds - - instead try to use this board to just talk about yourself and how you FEEL - that might help you not feel so alone.
Some people benefit from anitdepressants when they are going through depressing times. Other don't at all. Sor some it takes a long time to find the right one- which can be even more depressing. But a check-up for YOU, with your doctor, may be a good idea. You could decide together if medication is the right thing for you, or not.
It's natural to feel some depression when you are in a situation like yours. Sometimes just sharing it is enough. Other times, you need more. But please do keep checking in with us.
Carol
It's nice to know there are others out there who care and know what it's like. You could probably tell from my post in the middle of last night that it wasn't a good night, and it didn't get any better after I signed off. Mom kept talking in her sleep, and after I finally fell asleep, I woke up coughing (from severe reflux) and ended up throwing up in the garbage can next to Mom's bed. Then, we each slept for awhile, thank God. I got up about an hour ago, and was trying to be very quiet because I'm not real friendly when I first wake up. I like to have some time to myself before she gets up to get sorted out, and sure enough the phone rang and woke her up. It happened last weekend, too. I guess I'm gonna have to make sure everyone knows not to call here on the weekend until the afternoon. Anyway then I was short-tempered on the phone to one of the only 2 friends who ever come over and stay with Mom so I can leave for a little while. Luckily I know she will understand.
Just now had another phone call, my best friend (the other one who comes to help me with Mom) was at the door and had brought over 1 of her dogs to visit. She has 8 chihuahuas and 3 cats! Anyway it was nice. She loves my Mom as though she were her own, and Mom feels the same about her. We've been best friends since we were 15, and now we're both 52. Anyway, now that I'm completely up and about, I realize (again) how lucky I am to have my 2 friends, Molly and Carol. In fact, Molly came and stayed every night with us for a week not long ago when Mom was doing really bad, then had to get up and go to work every day. Carol stayed some, too.
So now that we're both awake, I have to get Mom up and fix her some breakfast. Thank you guys for being my new friends, and I'll definitely be a regular.
P.S. I'm already on an antidepressant and it's a big help. Plus I am good friends with lots of medical people, and with our doctor, and so I am always up to date on everything regarding Mom's meds, care, etc. And the hospice nurses are great, too.
I learned with my dad that just when you feel there is no hope, God intervenes. I hope that will be true for my mom. Try to take care of yourself and stay in touch
Stick to your guns about your Mom, you as the caregiver will know if and when it is time to think of placement, instead of putting presure on you he probably assist you and ease your burden. This is the first time my husband has been in the regular part of a nursing home because he needed a room of his own due to his MRSA- instead of the rehab part what a diference! I hoped it would encourage him to start doing more for himself but this nursing home is insisting he learn to dress himself- I probably will never go back to the one we used eight times while he still goes back and forth from home to hospital to nursing home even though it is so close but when the time comes for placement will go back to the first one -it is a beautiful place and they have the common areas set up like a home. I am there once or twice a week to visit a lady I use to work with and mu husband worked with her late husband in the 60's
Mom caused nerve damage in her right hand (little and ring fingers and that side of the hand) when she fell in April, and was on a pain med that made it tolerable for her. Then 2 weeks ago she developed an allergy to it, and also to the 2 others we tried after that. Yesterday we got another one to try, and I don't think it gave any relief, but it sure has made her goofy and physically 'floppy' and really uncoordinated. Also very slow mentally, mumbling, not chewing her food. I'm not going to give her any more, that's for sure. Also she has 2 different topicals to rub on the painful area, and they don't help either. She gets obsessed with it and just stares at her hand and keeps showing me where it hurts, and it about drives me crazy. Plus she's not sleeping well at all, which keeps both of us up at night and makes us both out of sorts the next day. I get impatient and snappy, and then I feel guilty, and I just feel like I'm on an emotional and financial rollercoaster. Honest to God, I just don't know what to do or what is going to happen.
I know you don't want her in a care center of any kind, but the day is coming when you will have no choice. If you can't stay home, and can't afford help and all government sponsored respite care is exhausted (have you checked with your state human services to see if there is respite care money available to you?), then you may have to put her in a nursing home.
All nursing homes are not bad, and you are still a caregiver. I realize that I am blessed to live in an area where most nursing homes are exceptional. Even then, I went to visit every day (I couldn't have five elders living with me, and they all needed day and night care).
I would start by touring - with an open mind - every home in your area. That way, even if you never have to make the move, you'll know you've done your homework. If you find one that you like, get her on the list. You can say no if they call. But if there is an emergency, and she needs to go from the hospital to a nursing home, she will at least be on a list for one that you picked. Even then, they'd have to have an opening. The good ones are generally full and have waiting lists.
Take care of yourself. If you have a breakdown, mental or physical, then what would happen to your mom? You need to plan for all options, even if you don't intend to use them. You'll feel better having taken some action.
Day services are an option, for when you are at work, but they are expensive, and you likely won't be able to pay for that (from the information you gave). The government rules need changing, and they will change, but that doesn't help you now. Do check with your state human services, though, to make sure you are getting all the help you qualify for.
Carol
I went to see a lawyer last week about possibly filing for bankruptcy. He is also going to work on getting my back taxes reduced. He gave me some forms to fill out and I'm going to work on them today--they will show in black and white the fact that there is more going out than coming in every month. But even if I could wipe out the credit cards and back taxes, I would still have to go back to using credit cards every month just to keep up with the regular bills, and that's even if anyone would give me credit after filing bankruptcy. It's just never ending. I think you are right that I should tour all the area nursing homes. I just can't stand the idea of Mom being in one. She has had to be in the rehab section of 2 different ones, and they were awful. Well, we'll see. Anyway, I hope we have a better day and night than yesterday. I'll check back later and see how everyone is doing. I'm so glad to be a part of the group here.
Jill
Talk to other family members at each one if you can - they are a good source of information, and watch how the staff treats the lower level staff members (CNAs, laundry etc.). If they are treated decently by the nurses, you have a clue to what is going on. The physical place is not as important as the staff. A new building with careless staff isn't good. An older building will do, as long as it's safe, if the staff is caring.
Do keep coming back. You have a road ahead, and support from people who've done some version of what you have done can mean a lot.
Carol
I found that in this area when you tour a nursing home they take you to an area that is for rehab which is nicer and the pts. are in pretty good shape. This time when my husband went for rehab he was in the nursing home part because he needed his own room due to mrsa which they took seriously not like the hospital did time-I did report them to the board of health in that county but it went nowhere- instead of rehab and there was a difference. Today when I went to see him he was not in his room which he only leaves for PT during the week when I asked where he was the charge nurse said she did not know " somewhere" was her answer and went back to chatting to her co-workers. I said I would go down to the director and tell her you lost my husband then she got off her duff and looked into it-they had pt. today because tomorrow is a holiday- if he had been in rehab they would have know where he was. Therefor when the tour is over I would walk around the facility and as someone else talk to family members- but I feel the most important thing is to use a N.H. close to you so you can go in often, and most have ombudsmen who do not work for the nursing home and can help when problems occur also most good N.H. have a comittee of residents who are active in checking on goings on and most good N.H. have group famity meeting every so often usually on a Sat about 3-4 times a year PJ take care.
I feel so badly about your situation! It is a crying shame that in one of the richest and most higly regarded nations in the world elderly people are not considered important enough to revieve enough governmental help to survive. I am NOT a political person; but I think that if we had spent the billions of dollars on the elderly that have been spent on this war, our country would be a lot better off.
The idea of placing a parent in a nursing home is one of the most frightening feelings I can think of. I know that may be a possibility for my mom, and it scares me to death. Right now she is in the rehab hospital attached to our cities hospital. Ought to be great right? The care has been good, but tonight I stayed a little later than usual. I was putting her night pills in her mouth and noticed that she was getting a whole primidone (for her essential tremor) instead of a fourth of a pill! She has had the same nurse for 3 days. Coincidently, her coordination and memory have been worsening. Those are also side effects of the drug. If a hospital can't get her meds correct, what will a nursing home be like?
Hang in there! I will keep you and your mother in my prayers.
Brenda
Of course her symptoms were worse. She was over-medicated. Bless you for keeping an eye on thngs. I went to the nursing home every morning, because I was expected there by my elders who lived there, but I made it a point to go at other times as well. It's important to check at different times, and double check meds when you can.
Blessings,
Carol
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
Jill
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
Getting professionals in the fields where you need them is a good idea.
Blessings,
Carol
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
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
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.
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
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
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.
Jill
Carol