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'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!
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'll take your advice and try to handle things better the next round.
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
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
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.
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.
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 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 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'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.
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.
Thank goodness for AgingCare.com !!
Thank you-I sure missed all you guys and thought of all of you-esp. you. My son worked very hard to get the computer fixed. I will have a follow up xray on Tue and hope the fractures are healing I have not been able to follow the docs instructions much she does not get it what it takes to be a caregiver. Our church sent over food a few times but other than that I have been on my own.
I agree about the sibling thing. Baffled, I have a suggestion you might want to give to your siblings who 'question' grocery bills .....tell them to go online at your local grocery chain & buy an order / pay to have it delivered. Remind them to add the 3 -4 packs of disposible diapers / pads, and cleaning supplies.....more laundry than they know, I am sure. Watch them squeek and run.
The sad truth of the matter is that money as a bone of contention wrecks more families than anything. Its funny how the ones who don't want to help sit there & calculate how much they should "get"......while claiming that they have busy lives, careers, family matters etc. I would like to encourage all caregivers to declare this month National I DON"T CARE MONTH and let their siblings know in no uncertain terms that they either help out or shut up. (they won't but you will feel so much better saying it.) Write a letter to your local paper declaring it national I DONT CARE MONTH and describe the caregiving experience as it relates to Missing In Action relatives / siblings & Know-It-Alls. If you change your viewpoint, you will see that being sad doesn't change a thing - they will still snipe & comment. You will still carry the whole load waiting for recognition and help.
I know this board is a godsend for all of us, but sometimes I think the only thing that will truly help us & get us through another year is if we stop being victims of what our family members think and publically say NO MORE>
This year not one relative called on my mom's birthday, christmas or new years....not one sent her a card or present, I sent her cards 'from the relatives' and called them so she could say hi..... and I did acknowledge that they back away because some are scared as they are older and the prospect of ending up like my mom is troubling - not something you want to deal with during holidays.
And then, unlike other years when I forgave & moved on, I decided this year - enough. Sometimes understanding without reciprocity is not enough for caregivers - who are in the trenches everyday.
I encourage everyone to stand up & say - What About Me? WHat about my Mom / Dad / Spouse? It is your turn to get some recognition and thanks. There is no way that any amount of money could repay you for what you (all of us do) - so expect and demand recognition and respect.
Take care all,
A family should sit down and decide that the sibling doing all the work is worth a certain amount of money - early on, ideally, so that the elders are in agreement. It seems awkward, but putting it in writing would be best. Then there's no second guessing as the money dwindles.
Does this happen? Not often. One sibling falls into doing what needs to be done. Others are too far away to help or just don't "have the time." This, of course, implies that the one doing the caregiving does have the time, without making any sacrifice, not that they just are good people doing what needs to be done.
I read these very things you are talking about frequently on this site and I get emails and letters about it. It's something that families should address early, but don't. And some of that goes back to the fact that caregiving (for children or elders) isn't considered work. Hogwash. It's some of the hardest work ever done.
I hope that people will see this anguish and start addressing the issue. The money is for the elder's care. If there is any left, it's for inheritance. Paying for the elder's care is very expensive, and family - even paid family - is generally far cheaper than hiring outside care or using a care center. Once in a care center, only wealthy people can spend more than a short while there without spending their whole savings. If a sibling is willing to do the work for less pay, and can do it well, then that should make everyone happy. But it often doesn't. Greed is an ugly thing. You brought out a great topic.
One very important thing about this is keeping good records of where the money goes - even for groceries. Don't mingle finances. Whether a family member is paid or not, keeping records and having things in writing is the best protection not only from siblings who want the inheritance, but from problems with Medicaid, should the elder need to go to a care center and their money runs out. In the end, it's all much simpler to have it all in writing.
Yes, I know. For many, this is an afterthought, because you were so busy worrying about the elder and just taking care of them the best way you could, you never thought about record keeping it until someone raised a question. I happens all the time. If life were fair, this wouldn't be an issue, but it is.
Carol
Those who are with the parent day in and day out know that it would cost thousands of dollars per month to hire done what we do for them. Yet, most siblings sit back and just let that one do everything for 10-20 years without so much as a thank you. But, let that parent pass away and there they stand with their hand out to get their equal share of the estate.
As I said, we're only human but none of the posts I've read have even mentioned being paid as that is not what we're there for. The siblings not on the scene seem to get paranoid and get suspicious that the one taking care of mom or dad is slipping money out of the estate in one way or the other. The opposite is usually true, we usually spend money out of our own pockets.
This leads to tension between siblings but rarely is it ever spoken. Then the arguments and bad feelings get going. We work for years protecting their share of the estate (think of how their share would be drained if profession help was hired all those years) and what do they do? Gripe and moan about everything that goes on but without offering to help do anything.
Am I hitting some nerves? This seems to be the source of some deep down resentment that normal humans would feel from time to time.
We're not there for the money, we're there because it needs doing, we don't try to cheat the elderly, we don't expect any monetary gain from it and to think that others are sitting back nursing a feeling that somehow we might be taking financial advantage of them is maddening. When there is a dollar involved, paranoia suddenly appears in people who aren't on the scene.
I've even had a sibling hint around that mother must be buying groceries for more than one family. (Yes, I felt like smacking her). If they were around more, they'd see that mother eats well, buys loads of fresh veggies and anything else she wants to eat. Yes, her grocery bill is high but I'm delighted that she still eats that well at 91 years old. But, again it's the ones who aren't around who start causing tensions between siblings.
Any comments? I think it's a real problem gnawing at people and it may need airing. Understanding can lead to peace of mind or the ability to ignore some things.
As has been said this is a problem for a lot of people on this sight. But something I want you to think about......It takes ALOT of energy to be upset with your siblings. This is energy you can use for yourself and for your mom.
And as far as being the "bad guy" here, well, if you know what you are doing is best for your mom, then what they think is just no big deal. A very wise person once suggested this to me.....IF someone calls you a chair, does that make you a chair???? I know it's a little silly, but it does put things into perspective, yes?
Welcome to the sight that will get you thru another day.....God Bless
Have missed you and was very excited to hear you are back. Let us know what all has been going on. Looked for posts from you for awhile, so just know you WERE MISSED!!!!!!
My siblings do not believe my Mom needs a caregiver. I've tried to explain to them that they don't see her on a daily basis and have no real clue. They only know what my Mom tells them over the telephone. I have asked them to communicate with me about visits to my state or wanting Mom to visit them in their states. But they have refused to do that. I help my Mom with her daily tasks, her banking, I cook for her and drive her where she needs to go. These things I do not mind doing, but I do mind being beat up by my siblings on a regular basis.
I am not sure what to do with keeping my temper with my siblings. At this time in my life I am so stressed out and unhappy. My Mom is a Diamond in my treasure chest and I would do anything for her. But she will not say anything to my siblings regarding how she see's them treat me. That hurts.
If anyone has some advise on what I should do about my disrespectful siblings, please let me know. I am about at my wits end.
Nonnee
Preparedness can save the day when things get out of control. Durable power of attorney would make your position stronger if things go down hill and she is not being reasonable. I thought it was impossible for me to sign someone into a medical situation, but I had to when they were unconscious and unable to decide. Otherwise they get a court appointed guardian which leaves you out in the cold. Maybe she already has one prepared with the will. If not, her condition sounds like you had better get moving immediately IF you want to be the durable power of attorney. You pay her bills or hire someone to do that at her expense, you manage the paperwork flow. Maybe you should research more of what is involved if you hesitate to devote more time. Another paper needed in many cases is a universal health care proxy that is good anywhere, not just at one hospital.
I empathize with your need for empathy. I too vent some steam and act as if nothing has happened. I try to minimize but the pressure somedays for a caregiver can be intense.
I know the day to day stuff is important but if you wait too long, she will not be able to sign for the POA or healthcare proxy if the lawyer thinks she is not competent.
Our hearts reach ouit to you.
Stillsongs