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
Greed is a horrible thing. Some people just think about the $$ they will inherit....its really really sad and even morbid of them to think of a parent in that manner.
The biggest thing that makes me sad, is some 30 years ago, my father carried me around on his shoulders, I remember it like it was yesterday...now I have to pick him up and put him in bed, or into his chair, and even help him sit on the potty.
I'm not caring for an aging parent. My husband is my Journey to bear. He has dementia and has had a mild stroke. He pretty much has his memory but has no
control over his bodily functions. It is to the point now where 24 hr care is necessary. I had surgery in april on my shoulder. It caused me to get fired from my job because of the necessary time off of work. It was probably a good thing so I can tend to him. The finances are killing us. I have tried to get caregiver pay but to no avail. There is no programs available for me. His disability is to much for medicaid. I sit here with no insurance or a supplemental income. Does anyone have any ideas. I completely understand the crying sessions. I have my fair share also. Lost all my friends, and family became distant from us. I feel alone.
I could have gone into greater detail, but now that I have found this web site I will have plenty of time to tell all. It is a journey every day with my husband. He does forget alot of things. But he remembers all family and close friends. It is things like, did he take his medicine, or trying to get him to change his clothes after and accident. He wears what we call seat covers but he does not hesitate to tell someone when he has a accident. Even around a stranger. There is a lack of emotions. He laughs inappropriatley all of the time. I am very confused. They say he has dementia/alzheimers. He lacks in the major signs of this diagnosis. He does have mild right side brain damage from the stroke. Could this be causing the loss of bodily functions. Does anyone have similar symptoms in their loved ones.
I imagine that your life has changed immensely. Anything you can do to get time alone and out of the house would really be a life saver. Constant giving without nurturing ourselves can lead to depression. I have felt myself slipping into that dark place and I suspended other things and found someone to help give care and went and did what was necessary to nurture myself for even a little while.
The internet makes finding resources. Each state has its own website, or you can google what you are looking for. Unemployment, food stamps, fuel assistance and others could help you along. If over 62, you could consider retirement. If 65 could get on Medicare. There is a lot of help out there but no one comes looking for you. You must go looking for it.
My heart reaches ouit to you. What about organizations that specialize in Alzheimer care. Hospice might help at some point. These are all ideas. Pull up Google and see what you find. Remember to bookmark what is good so you can easily find it again.
Stillsongs
I have been turned down by any state assistance because of my husbands disability. They say it is to much. We're getting by but it is hard. It just doesn't make sense that the state might pay for some in home care brought in from the outside but not consider paying me. I would really like to get a job. If for nothing else, the human contact. I grasp any relief I can get. I can get away for a couple of hours at a time. But like one caregiver said: You can only take so much WalMart. I've been so out of touch with the outside world (friends) I'm not sure what I would talk about with them. Isn't it funny how when this happens to someone, the calls and contacts stop from friends and family. Love takes presidence over friendships. I wouldn't give him up for the world. I'll make it through, thank god I stumbled onto this web site. It's amazing how it can make you feel like your all alone. Depression has managed to find me. Some days I don't think I can make it. I would like to just go to sleep for a few days. You get emotionally drained alot and physically worn out. I do. Thanks for Listening
I failed to mention. I am 54 years of age. My husband, who has been a truck driver all of our marriage is only 58. To young for retirement or medicare. He cannot get medicare until he has been on disability for 2 years. I don't believe you can get unemployment unless you are available to go to work. I havn't figured that one out yet.
It is so good to have you back. I can only imagine what you must be going thru. There are no words to express how bad I feel for your loss. The main thing right now is for you to find your own way. No two people grieve loss the same. I would be getting hysterical if someone suggested I get a job. Like you said it is well meant, but what about your broken heart and the adjustments that you will be making? This is the most important thing. My heart breaks for you.
Many of us posted our thoughts and prayers for you. Please know I have been thinking of you.I wish you could come stay at my house. I would fix you gumbo, and we would set up all hours talking or just being quiet. My fat cat would get hair on your nice clothes and we would laugh about when we were girls.
Please keep coming back here. We all want to know what is going on with you. I have missed you.Thinking of you and most definitely in my prayers.God bless your broken heart.
welcome back, you have been in my (& everyones) thoughts and prayers. I wish that all of the wellmeaning , impractical suggestions that people have helpfully suggestiong to you doesn't weigh to heavily on you. You deserve time to decompress and just get your bearings with no pressure. I don't know what to say, except I admire you for all that you have done, and all of your practical advice you shared with us. All I can do is ineptly send you a cyber hug and glad welcome that you are back, hopefully on the road to some peace and healing.
I can empathize and maybe understand a bit of how you feel, but remember when my brother passed away suddenly in an accident many years ago all of the well meaning comments did take their toll. Vent away - and apologies in advance for anything boneheaded I have said , or will say in the future....
Cat
Another issue: I believe all caregivers of elders have times - heartbreaking times - when they feel like the parent. They are doing the same things the parent once did for them. But please try to remember that this person is not a child, and has a long history behind them. It's hard to remember who they were before, and sometimes we can't really remember until they are gone and we work our way back. But our parents are still our parents, even if we have to change their diapers. They didn't choose this loss of dignity.
When exhaustion takes over, none of this matters. We are "taking care of a 200 pound baby." But in the long run, we need to remember who they were at their best. It's healthy for us all.
Carol
I'll take your advice and try to handle things better the next round.
It seems to me that sometimes a parent needs to have one child that is perfect or nearly so to reassure themselves they were a good parent. Of course, they're not perfect, we're talking about a mental process some go through. There's so many things we can't change that surround us, all we can do is learn to not let it control our lives. You can do it, it just takes a lot of thought and adjustment on your part. You can't change other people but we spend a lot of time and get a lot of bruising before we give up and go into the acceptance mode.
I'm new to this web site. I am greatly sorry for your loss. Four years ago you probably new exactly who you were. Then you became the greatest thing and the most important in his life. You kind of lost yourself thru the years. I believe you should take it one day at a time. You need to find yourself again and a whole new meaning to your life. Start by doing one thing you have always wanted to do but couldn't. See how you feel after that. God Bless You! You've made all the right decisions for 4 years. Now make one big one for yourself. LIVE!
Is it possible that you have become an authority figure in your mothers mind and as teenagers sometimes do, she's rebelling against you. Most children growing up sometimes have a parent they favor more. I believe it is because they can get away with more and that parent will believe anything they say. Your brother is just that person to your mother. He does not have to be authoritive to her. He isn't around her that much. He only needs to say what she wants to hear and then go on his way. I know you sound like a very loving person. You would not give up on a teen. Mostly out of love. I know you wouldn't even consider giving up on your mother. Bless you for that. Hang in there. No one can promise that it will get better. Just knowing you are doing the right thing is all anyone can ask for. Chin up marie. One day at a time.
"Is it possible that you have become an authority figure in your mothers mind and as teenagers sometimes do, she's rebelling against you. " Truer words were never spoken. No matter how hard one tries to not interfer and 'control' them, leaving decisions up to them and then supporting them, they have this long established pecking order in mind and we're stuck with it. It isn't based on anything we've done since they became elderly, it was established long ago. Strange, how rarely the favored ones step up to the plate and take care of the parent who favors them so much. I've come to believe that if the 'favored' one did take care of that parent, they wouldn't be the favored one very long. (grin)
I'm not quite yet the authority figure in my mothers life. She is 74 and still very much in her right mind. My caregivers responsibility is my husband who is 58. I am his authority figure. He can not make a decision on his own. Our children, which consist of yours mine and ours do not see the functiong of our daily lives but they are very quick to judge me. Some of them get down right nasty about it. They believe everything he might tell them. Although he forgets what he has said within hours of saying it. I'm sure somedays he doesn't like me very much. Someone has to control his functioning everyday. Like change soiled clothes, take meds, it's time to eat. etc. My last response was meant for marie, but it actually can help me also. Thanks...
I'm sitting here searching the internet and these waves of emotions keep coming over me. This is one of those days I can't stop crying. I keep thinking there has to be more to life than this. But What? It's terrible when you feel like your not worth anything anymore. I've lost myself somewhere along the line. My whole life has been about raising kids and taking care of my husbands needs. I love kids. Now I have a kid in my husband. It doesn't feel the same.. When he is not having his episodes of forgetfullness or incontinence, I see my husband as the man he use to be. Then I feel bad for the loss of all the things we had planned when the kids grew up. It's funny how you can feel so alone and yet your not. Lonliness is a problem for me. Family and friends are scarce around here. This may be a little self centered, but I'm only 54. Don't get me wrong. There is no possibility I would ever consider giving up on him. We've been married 29 yrs. Does anyone feel remotley close to this, or am I alone.
We have never spoken and I see how many people here care so much for you. People who understand. I can't imagine what you are going through, but it seems to me that you have already gone through the most incredible thing in your life and remained strong. You've been so strong for so long and I'm sure you will continue to be that way. My moms accountant, who has decided that now I'm back, is dumping it all on me. She mentioned something some weeks ago that might help you. Or I hope it does. There is a section of the social services that helps more mature people get back into the work force. Might you call them? It might not be the best choice for who am I to give advice? But I hear they offer training and assistance in finding something to do. Do you NEED to work? If not, there are so many worthy organizations that need volunteers. Do it at your own pace. Not the pace of others who don't know what you've gone through.
MindingOurElders,
Forgive me if I implied anything. There are days when I feel just plain mean. I don't know where my mom gave up(she's been sick for years some due to her own actions). She raised my brother and I all on her own. She has been such a light in our life. So strong. Then gave up. I wish I knew what it was. Not only is she my mother, she is my mentor, my best friend and she had to be my father too. This is what upsets me the most, but yet keeps me going the most. What a wonderful person I remember her being at her best.
Have you tried your office of the aging for low cost aides- we did not qualify but you might be able.
Yes, I tried everything. Or at least I think I did! I'll keep trying though. Congrats on you lunch invite. Make a point to relax and have a good time. There is no telling when you will get invited again. I hope you're feeling better. I had surgery in April. I got fired from my job because the surgery was more extensive than we thought. The time off was going to be longer than expected. It was probably better for me anyway. My husband needs 24hr care now. I can only imagine how hard it is for him after being a truck driver for 28 years and only 58 years old. He still has alot of his memory. It is fading though. He has brain damage with his Dementia. I contacted aarp and they are going see if there is any help out there for caregivers. God Bless and have a good time.
Some of you may benefit from this program. There is a list of states below where it is available but the list may be outdated, you might want to check locally to see if this help is available to you. This program allows payments to family members for elderly care.
Cash
Cash and Counseling program
Some of you may benefit from this program. There is a list of states below where it is available but the list may be outdated, you might want to check locally to see if this help is available to you. This program allows payments to family members for elderly care.
Cash & Counseling participants may use their Medicaid-provided personal assistance budgets to hire their own personal care aides as well as purchase items or services, including home modifications that help them live independently. By redirecting personal assistance funds from agencies to consumers themselves, Cash & Counseling allows people to hire whomever they want to provide their care and decide for themselves if they would rather hire a home health aide to cook for them, or pay a friend or relative to do it. The services paid for by the state are all part of the elder's authorized Medicaid care plan. What's different is that, in many cases, family members and friends chosen by the elder are providing those services instead of an agency worker.
Today, the grants are available in 12 more states — Alabama, Illinois, Iowa, Kentucky, Michigan, Minnesota, New Mexico, Pennsylvania, Rhode Island, Vermont, Washington and West Virginia.
According to the Cash and Counseling website, the program was created because, “family caregivers are the backbone of the long-term care system, providing millions of hours of care every year for no compensation and frequently at great cost to their own emotional health. They're burned out and exhausted from juggling work, family responsibilities, and caregiving. In addition, many caregivers have to reduce their work hours or even give up their jobs to take care of their loved ones. By supporting caregivers, we're helping them hang in longer, and, hopefully, relieving some of their stress. Keep in mind, that even with Cash & Counseling support, family caregivers are typically paid lower-than-average wages and, in most cases, are paid for only a small fraction of the hours of service they provide.“
To apply for the program, elders apply through Medicaid. They are assessed in the same way they would be for traditional agency-provided services. If they choose the Cash and Counseling option, they work with the program’s staff to develop an individual budget and care plan.
To learn more about the Cash and Counseling program, visit the website at www.cashandcounseling.org.
Access the Medicaid website at www
Carol
Speaking of getting involved, it appears Congress is going to take on changes through out the health care system. If caregivers for the elderly at home don't get involved early on, once again they will be totally overlooked and things won't be any better for those who are keeping the elderly at home. The squeaky wheel gets the grease.