Needing to vent: Our parents are like children.

Brenda - I'm so happy you caught that medication error. No matter how good the home - and with the current culture change going on, many are getting much better - the staff in these homes is overworked and they make mistakes. So do hospitals (I think the danger in a hospital is worse than a nursing home, in many cases). We must be advocates for our elders, no matter where they are.

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

Jill,
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

Pj
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.

Nursing homes in many areas are improving, but I know that in some areas of the country they are still pretty bad. Even then, if you tour every one you can find time to see, you may see that some are better than others. You may even find a jewel among the trash. I sure hope so. You won't be happy with her in a bad place, but a good one can be a godsend.

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

Hi Carol, thanks for responding. Mom is already on Medicaid, and we are on every program available already. Unfortunately, the only help available is for several hours a couple of days a week. That doesn't help us because I can't ask our caregiver to just leave for that time and come back later. But I did read something on the homepage of this site about a program where they offer you a certain amount of cash each month that you can pay your caregiver with, even if it is your family member. I'm going to call about that next week.

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

PJ, I know the financial thing, and it's scary. Your mom likely qualifies for Medicaid. It's a lot of paper work, so keep good records. The time will come when you will need those.

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

Brendalou, thanks for the support on the no nursing home decision. I just fear that, at some point, there will be no money left to borrow to pay for her caregiver, and there is also no way I can just quit work and stay home with her all the time. I have always said that even if I had to sell everything and have us live in my car that I would do it, but of course we couldn't do that. I already can't afford to pay back what I have borrowed, plus the borrowing will have to continue until the end, if there is any place left that will loan me more, and every month is just gets worse and worse. I'm afraid the day will come when I can no longer rob Peter to pay Paul each month, and then what will happen? And I'm almost to that point now. Then there is also the question of, what if she gets to the point that she needs more care than I or my caregiver can provide? I know what you mean about God intervening and taking care of things, and I have total faith in Him, but as I said before I sure don't see any way out of this.

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.

Brenda
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

PJ, I am so glad that you found this site. The support here is wonderful. It sounds like you have reached the point of no return. I have been getting pressure from my brother to start looking for a nursing home for my mom. While my head says it would be the best option; my heart says no. I just can't do it.
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

Thanks Cat and 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.

Cat is right about talking it out. It truly lightens the load when you share with others who have been where you are.

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

Hey PJ -
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.

Austin,
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!

PJ
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.

195austin, thank you for the kind words. Unfortunately, Medicaid will only provide an aide for a couple of hours, 2 or 3 days a week. That really doesn't help me because I can't just tell my caregiver to leave and come back in a little while. And my Mom has always made me promise that I would never put her in a nursing home no matter what. I have been to several and I just couldn't do it, I know she would die from unhappiness if nothing else. I have a strong faith and I know God is with us, and I'm just trusting that he'll keep things together for us even though I sure don't know how. I pray a lot, and would welcome prayers from others. Thank you again for responding, and I hope to hear from others and become a 'regular'.

PJ
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

Hi, I am new to the site and I have submitted my story but I guess it went to the wrong place. (If you want to read it, I think it is under the topic about the cost of caring for aging parents). To recap it, I am an only child of an 88 yr old Mom who is bed-bound and nearly blind. She has no money except for a very small social security check. I work part time, and have to pay for a caregiver to be here every minute I'm gone. We have no family. She has been with me for a little over a year, and in that time I've gone through all my savings and have taken a 2nd mortgage on my house. I use money from that every month just to make ends meet, which puts me further in debt, when I can't even pay the bills I already have. I have turned off/cut back/done without everything except for cable tv, because about the only thing Mom can do is listen to tv. The last thing I bought for myself was a pair of sandals a year ago. I have no life at all, just go to work and come home and take care of her. Several months ago she climbed out of her bed and fell, and since then I have been sleeping on a small mattress on the floor next to her bed. She wants me with her every minute I'm home, so recently I moved her (us) into the den so that I could get things done (laundry, kitchen, taking a shower) and still be right by her. When she fell, she caused nerve damage to her hand, and that is one of her 3 topics of conversation: her hand, her nausea (sometimes lasts a couple of days) and her bowels. We are beyond broke, going deeper in the hole every month, and I can't tell her about it, it would just worry and upset her. So I come home very tired from work and spend the whole night taking care of her, then get up at 630am and start over. I only have 2 friends who will come occasionally and stay with her so that I can go to the dr or grocery shop, and not have to pay the caregiver even more. I hope someone will respond because sitting here in the dark on my computer is about all the company I have.

Why can't I remember to log in first! Surgery went well; she is in the rehab hospital now. Probably for 2 more weeks. The problem is that she wants me there all the time. I have someone with her from 9am until 4pm. The rehab called the caregiver's company and said that she was doing too much for her. Then I gt there at5 pm and stay until 9:00. I know that I am not helping her by waiting on her hand and foot; I also know that she is scared. I feel so guilty if I am not there, but I am exhausted! Up at 6am, leave for school at 7am, home at 4...you get the picture. How do I wean her off all of the attention? and deal with the guilt?

Best to All
Brendalou

Hello Friends!
Austin, I'm so glad that your test came back good. I'm sure that is a relief for you and your family. Roxie, I hope that school is going well for you and that your mom is buzzing around in her new wheels!
I need some advice! My mom's surgery went very well

195Austin,
I am so glad you ultrasound came out with wonderful news. What a relief huh? I am glad you got a phone call from your husband. He does care. That was a very long trip for your son to drive. I bet he was very tired at the end of the day. What year of school is she in?
Right now everything is going smooth for mom while I am at school. There will be days that will be very tough to handle, but I will make it. Maybe through tears but I will accomplish this because of this sight.
Mom got her electric wheelchair the other day. She rode it the first day and bumped into furniture and walls, but did very good. My husband and daughter was home when she hit everything. They started explaining different things to her and got her confused and scared to use the wheelchair now. I will wait a few days and start over with her again. I think she can master it. It will just take a while. The toggle for direction and movement of the wheelchair is very touchy. I tried it and it is not easy at the beginning, but she will get it in time. I told her it will just take practice to get the feel of things.
Everyone take care and you are in my prayers. H
Have a good weekend.

Roxie
How are things going for you I am so glad you are getting out, Had my ultrasound yesterday and it was read right away and no cancer was found- my husband actually called me to see how things went I was so surprised- our son got back from taking his daughter to college it took 10 hrs to drive back-I had wanted him to stop at my Moms to break up the trip for him she lives 5 hrs from the college but he didn't have time.

I am so sorry for your pain. I can feel it! I wish I was someone you knew so I could give you a break. Even for a hour or two. There has you to be someone that can do that for you. Some times all we have to do ask. lisalives

To all:
This shows that caring for ourselves, while we care for others, is generally good for all. It's not always possible to have it work this well, and there will be rough spots to get through, but this is truly a heart-warmer.

Good for you, Roxie.
Carol

Hello Friends,
Brenda you are in my prayers. I pray for every caregiver since I am one and can understand what many many people go through each and every day in silence.
I started my classes yesterday. I feel so much different being at school. It is a new life for me outside my home. I still think about mom constantly, but now I have things to take my mind off her for awhile.
Yesterday she had to stay by herself for a while. She did very good. In fact she said it felt good to be by herself for a while. I bet it did because it felt good for me also.
I got her up and fed her breakfast before I left. Therefore all she did was sit in her chair and watch the birds outside the window until the homemaker came in.
I feel like a new person. I wish every caregiver could do this.
Everyone take care

Dear Friends,
Thank you all for your kind words and caring! It means so much to know that we are in your thoughts and prayers. We are still waiting to get on the OR schedule. My brother will be with me during the surgery, and he can usually get more info since he is a doctor. Hopefully, it will be Thurs or Fri.

How are all of you doing? I think of you often. I went back to school today for in-service; the kids come Monday. (Hopefully, that won't be surgery day!) Getting back to work made me realize how hard it has been being home with my mom all summer. It also made me aware of how much so many of you go through being full time care-givers. There is surely a place in heaven for caregivers! You are all in my prayers! Take Care.
Brenda

Brenda
Let us all know how things go for you and your Mom- I hope you have someone with you. Surgeries always take longer then you expect because there is so much pre-op work to do and docs are always late and then they have to write up reports and clean up and such I do hope he oe she will talk to you in person at our hosp, you get a phone call and I hope they let you in to the recovery room, When the operation starts get yourself some coffe and something to eat and something to read and add at least 1 or 2 hrs to the time they give for the operation it helps if you wait in a waiting room for families instead of the pts, room so you have others who are going through the same as you- my husband has had about 15 surgeries.

Hi Brenda, just wanted to let you know that I am praying for your mom. Prayer is a very powerful form of medicine. You take care of yourself and get some rest also. Please let us all know how the surgery goes. We are here for you.
bwthrs

I will pray all goes well, Brenda. I've been exactly where you are. I imagine they are putting in a shunt.
Take care, and please let us know how it goes.
Carol

Hello Friends!
The doctor feels that my mom has normal pressure hydrocephelous. He will contact a neurosurgeon tomorrow (really on sunday!) and schedule the procedure as soon as possibel. I have some reservations. Any type of surgery is dangerous at 86, especially brain surgery; however, without the procedure she will contimue to decline physically and mentally until there is no one there. So we will take the risk. Please pray for the best outcome. Thanks to you all!
Brenda

Hello Friends and Newcomers,
Brenda and Austin I am so glad you ladies had a good vacation.
Brenda I am glad you found the problem with your mother. I know she is so grateful that you are looking out after her. Not many people would go that far. They would just let the parents suffer with the symptons.
Sounds like everything is working in your favor now. Keep up the good work and keep writing.
Secondhalfoflife and Denise welcome to the site. You will find friends here that do listen and completely understand what you are going through. As was said in a previous note venting does help so much. Just getting things off your chest that no one else understands helps so much. We are here to listen and everyone on this sites does just that. Therefore feel free to put thoughts here we will not judge you, because we understand.
Take Care Everyone