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
I've been there myself. Because I am experiencing many challenges right now please forgive me if I sound brusque. I do care enough to still check this board & respond if someone is really hurting. Remember you that although you have to be NICE to EVERYBODY involved in your dad's care, don't trust anyone to do anything for you. The people who can pull the strings are usually not the social workers unless you find an extraordinary one. Just keep at it and the ones who can help you will see your actions and start to help.
1. The discharge planner at the hospital can tell you why each snf is denying admission - DON's usually scrutinize patients & decide. All you can do is be proactive - ask to read the face sheet that is being faxed to the snfs and have a real talk with the business office at the snf's you are interested in. You may reach an agreement with them if they see that the family will be there & be proactive - ie. help with meals, sitting, bathing, etc....
2. Any grievance you have with a snf has to be documented - take pictures and call your ombudsman....but it will take energy that you need to get yourself & your dad through this. don't burn yourself out doing anything that is not good for you or your dad.....
3. you are lucky that you have your own house & your bro & dad are on the same block. Take anything that pays - use any severance or ui - take care of your dad - know that at some point you will see a solution....you are lucky you have someone you love so much that you are willing to walk through this hell - keep doing it and the good tired people in healthcare will respect you and help in ways that you may not be aware of. Many people in healthcare - CNA's to doctors are caregivers of family members too.
4. if you really want to get involved, start with your own local politics and get known - meet others in your state. but it has to be constant, pleasant, networking - I would give my left arm to see a million caregiver march - but we are all busy being invisible taking care of our loved ones.
You are heroic - awesome and can do it, your dad is one lucky guy.
I'm a newbie and have already posted on 2 other topics. I've been reading all of your comments. I too am in the same situation. I lost my job in November, it was sent to India. 23 years with the same company, shows how much they appreciated my hard work. Since November I have been caring for my father who is 87 and not very healthy along with my brother. We try and take turns and give each other breaks but it is so stressful I'm about to crack.
Dad has dementia, CHF, retains fluid so bad in his legs he can't use them and then it travels to his lungs and he can't breathe. He's diabetic, has had 2 strokes in the past 7 years, 2 back surgeries, and both knees replaced since he turned the ripe age of 75. He's always been a fighter, and when he's had a setback he's bounced right back up again. The past year this is no longer happening. He has been in and out of the hospital and in and out of various nursing homes for short term rehab. We have ended up pulling him out of the homes because his health went downhill instead of them making him better. 2 weeks ago he was in a home for rehab and due to the neglect of the nursing home he was rushed to the ER in an ambulance with CHF again. Everyday I was at the home checking on him, I kept voicing my complaints about his health and they never listened to me. I have now filed a complaint against them with the Dept. of Health. I pray it does some good.
My father is currently in the hospital again with fluid around his heart and in his lungs. He has lost over 25 pounds just in fluid in the past week.
There are only 2 nursing homes left in my area that are reputable homes with good standings. We have tried to get dad in both of them before, and tired again now but they have both denied him. What gives them the right to deny an elderly patient care? Today I wrote a letter to our local news station, the same letter to Hillary Clinton my senator and another to Govenor Paterson about the discrimination nursing homes take part in. Also about the under staffing and neglect that residents suffer.
My dad is so weak right now we would never be able to get him home and in the house on our own. We don't know what to do. Physical therapy at the hosptial isn't even trying to work with him to get him stronger like he was before he went in there. They put in in their records that he was too weak to stand up and thats the end of it. No exercise with his legs at all even when he's laying down. My brother and I go to the hospital and do exercises with him while Medicare is paying this incompetent staff for nothing.
If I had the money and the knowledge, I swear i would start up a union for the Elderly. They have got to start fighting back, or those of us who care for them need to start asking for financial assisstance. I need to find a job, what is going to happen to my father when I am working and can't be there to help if he falls down or has a bad bout with dementia. My brother can't do it alone. Other states have funding for caregivers....NY is not one of them. This should be a law throughout the USA. I can't make a decision to leave my dad and worry about my own survival or stay with him and lose everything I have with no income. I'm a single parent and own my own home. My father luckily lives 4 houses away with my brother. I am frustrated and frightened more then I have ever been in my entire life. I need to stay strong...but i find myself failing miserably as each day brings a new crisis to deal with. At this point I have no idea what is going to happen and where my dad will end up, but it will be over my dead body before he ends up in another butcher house nursing home. After going thru what I have with my father, I would rather die healthy, then have my daughter live through the trauma and heartache that I am living through right now.
Let's form some kind of committee and spread the word. I have started and will continue to send letters to anyone that will listen. We are humans too, and we have earned some kind of support from our government for keeping another human being alive and well taken care of. We use our own expenses, our own time and our prayers to get our loved ones the help they need. And damnit, we do a better job then any nursing home or hospital can do because we know what the person we care for is all about and what they need.
God Bless all of you that are caregivers, we are in this together!
I 'm so sorry for what you are going through, I so hope the docs can help you.
Carol
This is really aging both of us fast. I try to go over details of the day that might trigger his restless bouts to no avail. Sure wish the doctors would come up with something to help his rest.
Thank you for all the support. It really does help!
Brenda- I am so sorry to hear about your mother falling today. That is not easy to handle. I hope you get to see the doc. soon to see what is going on with her.
Has school started yet?
Brwthrs- I am so sorry to hear you birthday was a bust. It sounds like his kids need to do some growing up. They must not understand the terms "He can not drink". If you are like me you think I finally have some time to myself to enjoy then all of sudden something pops up and here we go again. I am really sorry. Can you get some respite care so you can get away for a while?
I do know my mother can work my husband and get him to do things for her that she can do herself. He will tell me but he can not tell her no. He comes to me then I must be the bad guy and tell her she can do that or she cannot eat that because at this time she is on a gluten free diet.
She will sit there and tell me she can not do this or that. I know she can. I do enough talking and she will eventually do it. My mother was never that way before.
Austin-I am glad you are having some time to your self. It sounds like your friend was a very good person and a hard worker. I bet it is very hard on her after being so busy all her life. How is the counseling going for you? Does it seem to work for you? I just do not know when I can get the time to go to counseling? This site seems to help me alot. It is like a counseling session for me.
Sunshinecaregiver- Nice to meet you. I hope I never have to be in a nursing home either or my mother. I worked in one for five years and I know what goes on. I also have a garden area for me to get out, but right now it is too hot here. We are having a heat wave. Please come back to the site and visit.
Take care ladies I will talk more later. It seems I never lack for words or complaints. See ya at Walmart some day.
Take care
Roxie, as I was re-reading the entries, I had a thought. Could the marks on your mom's thighs be pressure sores. My mom had one a couple of years ago, and it looked a lot like a purplish brun. Then it blistered and opened up. Just a thought. I don't think potassium (or sodium) is our culprit. We spent 10 days in the hospital a few years ago for low sodium. So not I keep a pretty close eye on her labs. I don't lnow what is going on. We tried to go out today; she can not get herself in the car any more. I'm not sure how much longer I will be able to do all of the lifting. She had another fall in the bathroom this evening. Things seem to be excelerating.
Austin~ I hope you are getting some rest while your husband is in the nursing home. Will he be able to do any self care when he returns home? Is the counseling helping? I know I probably need to go. Just can't find the time. When is your trip with your old friends? That may do you more good than counseling! (lol)
bwthrs~ I'm so sorry that your birthday was spoiled! It seems that Johnny's kids have no concept of being adult and taking responsibility. No matter what he told them, one would think they would have enough sense not to buy him alcohol. They may be more trouble when they take him than they are worth. I'm sure you are tired! Try to get some rest.
Well ladies, maybe I will see you at the Wal Mart Counseling Center!
Actually, this counseling center seems to help more than anything, thank you all for your care and concern!
Take Care,
Brendalou
Wow, what a week-end I had. Today is my 50th birthday so Sunday my kids gave me a birthday party at my sons house. Before we even cut the cake Johnny's kids called me and said they had brought him home early so I had to leave the party to come home, only to find that they had let him drink and he passed out about in less than an hour after they brought him home. I was so upset over it. I told them about the test results before they took him but it was like they either didn't hear me or they didn't care. Then this morning we had Tropical Storm Eduord come through, we got alot of rain so when it was over Johnny is out walking around in the mud and water. He tracked all through my house with wet shoes so now my house smells all musty and meldewed. I will have to spend all day tomorrow cleaning. What a birthday. I don't know what to do about them letting him drink. I tell them not to but they don't see any harm in it. What is wrong with people? Don't they understand. I feel like I am talking to a brick wall. I wanted them to spend time with him but now I know that I can't let him go anymore if they continue to let him drink. I guess I am just really really tired.
I think your daughter should do the majority of the planning of the wedding- just you getting there is too much to handle-people who aren't have no idea how our time gets shucked up with no control of us. I went to see my husband at the N.H. today and took him lunch and only stayed for a while because I have a good friend in another nursing home that I try to visit twice a week I worked with her years ago and she has five children but only one visits regularly and she is depressed she had a stroke soon after she retired she use to work two jobs take care of her kids and very disabled husband. I'm also trying to rearrange our house and get of a lot of clutter so he can get around the house easier. Hang in there- you are in my mind and heart and I will pray for you. I have been going to counseling for a while we tried couples counseling but it did not work out I never got a chance to talk, my husband just wanted to complain and rolled his wheelchair out the door too many times instead of working on our problems.
Carol
Brenda I loved the statement setting up a counseling center at WalMart. What would we do without Walmart these days.
Austin I am so glad you are the point where you can be yourself. I am very glad you can get away with your friends. Have fun!
Brenda, My mom did that a few weeks ago but her potasium (SP) was very low. In fact she was in the hospital for a week over it and had to have IV Potassium (sp). It is too bad your Dr. was sick maybe you could have found out something.
I looked up Support Groups well they are during the day hours when the homemaker is not herea and none of the my family, therefore I can not leave mom alone for very long.
Now mom has places on her inner thighs that looks like burns, but are not. I wondering if she has a spider bite. I sure hope not. I called the Dr and they call in a prescription now I need to look it up. I am just curious as to what it is.
Brenda, I feel the same way about being on cracking ice. You never know what the next day will bring, sometimes the next minute. That is part of the anxiety is not knowing.
I know I should have never said that about my daughter's wedding, but I feel so overwhelmed with something else added on. I am happy for her and will be there always but some days it is just too much. Counseling if it cost anything is too much for us to pay. Boy I am jumping from subject to subject today. Now you can see how my head works.
I think a book would be great it would have to be fiction like you said no one would believe any of it until they are there.
Take Care everyone I love reading your posts it helps me so much.
Have a good day!!
Thank you so much for your concern! I really don't think that it is her blood pressure. It is very controlled. I think it is something neurological. my brother, a doctor, thinks it is her vestibular system (whatever that is). We will take her to a neurologist soon. I, too have had to call 911 even though my mom is not large (120 lbs). Sometimes I just can't get her up. We have a commode, she just doesn't want to use it!
I am so glad that you are getting away to visit with your friends! I try to take a few days each years to get away with some friends. It will do you a world of good. sometimes it is the only time that I feel like a real person! That statistic about caregivers scares me, too! I will be really mad if my mother lives longer thatn me! (lol) Seriously, this is a difficult job that really takes a toll on our bodies and minds. I seem to have a different symptom every day! The doctors just say "You have to reduce the stress!" Of course, no suggestions how.
Have a wonderul time with your friends! Laugh, talk, eat and DO NOT feel guilty for being there. You deserve it.
Brendalou
Does your mother complain of feeling dizzy-sometimes my husbens blood pressure drops esp. if he has not had enough fluids and he gets spacy. Would medicare cover the cost of a commode so when she is weak you could just transfer her from bed to the commode or would she use a bedpan at times she is weak. I am blessed because I can call 911 to pick my husband up when he falls he is very havey. They have been here over 40 times in the last few years. I so wish I could help you.
I was reading backwards and saw your post. It sounds like you have your hands full right now. I know that a wedding should be a joyous occasion, but they are really stressful, too! Is there anyway that you can get a little extra help with your mom so that you can enjoy the wedding? I use Home Instead with my mom. They are expensive and I feel guilty when I have them for anything except work, but sometimes I just have to get away! I, too, have felt like I need counseling, but it is expensive. It is also hard to find a good counselor and the time to get there! The only support group in my town meets during the day, and I work so that doesn't work. Maybe, we could set up a caregiver counseling service at WalMart! That seems to be the place we all get to go! I bet it would be a success! Well, hang in there. Hey, if we put all of our chapters together we would have a best seller. Fiction, of course, because nobody would believe what really goes on in a caregivers life!
Brendalou
Well, I have hund on to the rope, tied a big knot in it, but I feel myself slipping! Today, I literally don't know what to do. I usually feel pretty much in control, or at least know what is going on with my mom, but I am at a loss. Maybe someone caan give me some advice. My mom seems to be losing ground very quickly. This morning she literally couldn't stand or balance herself. I had to drag- carry her to the bathroom and back to bed. She ended up on the floor and I had to lift her to the bed. Sometimes, it seems that her legs just freeze; she can't move them. Obviously, this seems to be neurological, and we had an appoint ment with her neurologist today, but he cancelled due to illness. I just need to know what to expect. It seems that she has gone down hill steadily since she got out of the hospital a week ago. I know that no one has a crystal ball, but if the doctor would just tell me something I would feel better. If I could know that her system is shutting down or what comes next, I could deal with it. This way, I feel like I am standing on thin ice and it is cracking. Does anyone else feel that if you just knew what would come next, you could cope? Is it just me? Because I feel like I want to crawl under the bed and not come out! Any words of wisdom?
I hope everyone else is having a decent day. Take care!
Brendalou
Carol
What is the name of your book-I would like to read it.
You are ripe for helping others. It's so exciting. Please do everything you can to take care of yourself physically and emotionally. Stepping out and helping other caregivers will help refuel you. Congratulations!
Carol
Recovery.
I am so glad you finally got a day at first did you say -now what am I going to do with myself you probably filled it with have to do things and got exhausted-I use to
until our elder lawyer told our son 60 per cent of caregivers die before the ones they are caring for and I said to myself I have not lived yet. That was awake up call, now my husband is in short term nursing home and I'm going to meet with 3 friends from nursing school that I have not seen in almost 50 yrs upstate for 3 days and I don't feel at all guilty I'm going to enjoy every minute of it--my friend could not believe I was really going to do it--I had talked about it for years.
I know about the guilt of thinking "I should be happy this is happening, but I can't because it's one more thing to do and I'm passed my limit." That kind of thing, short-term, is life. Long-term, it's a pathway to depression and health issues for you.
Your state human services (you should be able to find a number on a state Web site) should be able to direct you to some counseling resources that are free or sliding scale.
Go to Wal-Mart??? That's not a vacation, that's one more thing to do! People who aren't caregivers really don't know what it's like to be on call 24/7. There's no getting away from it, mentally, even if you can grab some sleep.
Do try your local helpline, even if it's for alcohol. They are all informed about all issues so they should be able to get you a number. You may have to follow a trail, but you'll find something.
Some states have 211 set up lke 911 - it will one day be national, we hope. If that works, you'll get a menu of all kinds of services to choose from, so listen to that. If you don't have that, check with your county or state social or human services. There has to be help for you.
And keep coming here. We understand.
Carol
All I have done is look in the newspapers in our area. I will check with the area agencies. Yes I need to get out, but of course that is not always easy. My husband will stay with mom only is he is not working. He comes home at night, eats and just goes to bed. He helps by fixing mom lunches on the week ends, but then in the middle of the night he will say, "I heard your mom moving around" I tell him well go check on her. "No" he says. Then I must get up when he is already up and see if she is ok. And she usually is.
Then last month my 22 year old daughter decides she is getting married in Sept. of this year. In a town 10 hours from us. She lives with us right now. I should have been excited, but I could only think "another thing I have to do" I did not tell her that of course. After the marriage she will live with us for 6 months then move with her husband in Hawaii. Then when he gets out of the service in Aug. of next year. She plans on moving back in with us until they can find a place. Most people would be excited about a wedding, but I am not at this time. I do not know if Mom can make the trip or if she will be well at the time.
Since I am talking so much now I must look for additional help at home through counseling. I thought about going to a counselor, but we can not afford the expense. I do not work, but have returned to a community college to help me through these times. Maybe I can make money later. But the school is also costing us, but I can not stay at home 24/7 I need a break.
I tell my family I need a break away from the house, but they just look at me and say ok when do you want to go to Walmart. Please....Walmart I mean away from here for a week-end. They just look at me like here she goes again "whining"
I will quit now before I write another chapter.
You need to get out and talking with people who understand (as you see on this group) is key. If you can find a physical support group, too, it would help. Otherwise, see if your state human services can give you a counselor for awhile so you can vent with them. You need to talk it out with people who don't judge you.
Carol
Carol
Well I guess I have gone on long enough about my problems. I am just so glad to have some place to go and vent the feelings that I am having. Thank you so much for creating this site.
Brenda
There are people in congress working on these issues. Amy Klobuchar of Minnesota is one. She is a member of the "sandwhich generation," too, trying to juggle kids, husband and parents, so she listens. You may want to go on her Web site and see if you can send the message above to her people. You wrote it so well. At least you will feel you've made a political connection.
Keep coming back. We know your pain even though we can't fix it. Many of us struggle financially because of all we gave up. We have no Social Security to speak of, since we don't get that as caregivers. We have no retirement. You are so right. Get political! AARP is also active on that front.
Best,
Carol