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My mom was recently diagnosed with cancer of the esophagus and is unable to swallow. She now has a feeding tube which has to be maintained every few hours. Since I am the only child, this like all other tasks have been given to me. Oh and by the way, I'm also married and my marriage is already on shaky ground because of various prior family issues, and I fear this will be the breaking point. My husband and I are already separated, and only see each other on weekends anyway, but now that this has happened, I don't know how we're even gonna have that time. We've already been through a lot with my dad who passed 3 years ago and we've only been married 6 years. I hate to sound like a whiny baby, but this whole situation has gotten me so overwhelmed and depressed because I'm trying to do what's best for everyone but don't know what to do. I have no siblings, or anyone else that my mom would feel comfortable with lthat could come in for one day just to free up some time with my husband and I. Since there is nobody else that can help, I am overwhelmed by everything because I don't see how this can be resolved. I feel guilty for even thinking like this, but I don't wanna end up with nothing. I already lost my job and am unable to work because of this situation and I'm afraid my marriage will be next. I realize this must seem extremely selfish but I can't help but feel like I'm trapped in a situation that I can't get out of. Any suggestions?

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To look at the bigger picture of the rest of your life being ahead of you, it looks imperative that you find a job soon, go back to work so that you don't end up destitute and homeless. I don't know how long you have been out of work, but the longer one is out of work and the older one gets, the harder it is to get back into the working world anywhere close to where you use to be. Take care of yourself in terms of the bigger picture as well.
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Jude - Thank you so much for your response. As far as payment goes, no I don't get a paycheck, but she is helping me out financially in a major way since I was laid off, which ironically happened not long after her stroke. This is part of the reason I don't wanna say anything for fear that she will throw that in my face and use it against me. I already feel like a piece of crap, not only because I can't provide financially, but even worse, that I've been relying on her financially which is the worst. According to what mytherapist says though, it all equals out because whatever I do for her would probably end up costing more than what she pays for my expenses (health insurance and phone) I just feel like a freeloader because I'm not used to being out of work this long. I don't even know how I would handle a job right now anyway although I always look. You never know when the right opportunity might come along. Then I guess she'd have no choice but to hire someone to help. I do take care of myself which of course I feel guilty about because it makes me look sensitive and insensitive. I mean, here's my mother sitting there with cancer and a long scary road ahead of her, and I'm whining about my own petty issues. I may have to hold off on your advice until I feel it's the 'right time' if ever. (Might need to break out that wine (or in my case, the 'hard stuff') before that conversation takes place!
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If you have the good fortune to have a great husband like that, trust him! He deserves the compliment. Just don't forget to support him right back, and never take him for granted - though quite obviously you wouldn't dream of doing so.

Musing, you'd have thought, wouldn't you, that your mother might have learned something from her own experience and would want you to avoid running into the same trouble she did. Unfortunately, it looks possible that instead she is thinking that somehow it's your turn - not consciously, I'm sure, but if she's feeling ill and depressed there could be a certain negativity to her whole mindset.

Who shut you down over the weekend cover? I'd argue! After all, you're not limited to services that are paid for by the insurance so keep looking - are there any reputable agencies in the area? Or perhaps ask one of your mother's current team for a recommendation.
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Carla and Countrymouse - Thank you both for that feedback. As far as the whole home nurse thing goes, we do have someone that comes out every couple days but we only get 6 visits from the insurance. I've asked the nurse about weekend care but was told they don't work weekends. I totally agree that my being there too much is part of the problem, but she doesn't have anyone else and I don't know who to ask. When I mentioned the nurse coming over on weekends, I was shut down immediately so I haven't mentioned it since. My husband has been super supportive (almost too supportive if that's possible), and I fear this may be too much for us to handle even though we have been through a lot of stuff already. He's been there for me through every other crisis that's occurred so I suppose he will stick around, but everyone had their limits. My fear is when all this is over I will be left with nothing. No job, no money,no marriage. I'm just trying to do what's best for everyone and I already have the brunt of all my mom's affairs on my lap which up till now I've been ok with handling. Now I need help and don't know where to turn. It doesn't help that my mom was a caregiver for my great aunt and uncle with no help so of course I wouldn't expect her to have empathy for me. Also, my father eventually moved out and left my mom and I (even though he still took care of us)and their marriage was basically a shambles which is what I'm trying to avoid.
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Im joining the queue Diamond. I have said elsewhere that emotions do get in the way of carers' performance. I dont mean that negatively ....what I mean is you have to be healthy and fit physically and mentally to be able to give good care...FACT.

Most of us in here, if we were honest, would tell you that we have fallen foul of the emotional ties that bind at some point or other and have learned the hard way that sometimes you just have to be nice to YOU. You don't want to end up resenting or still worse hating your mum but it could happen and in your case (not everyone's you understand) it is within your grasp to do something about it.

Your mum is financially established so she can afford it - it is not up to YOU to afford it. Let's start from scratch here. Is she paying you for your care of her and if not when are you going to get that bit sorted. You cannot live or be expected to live on thin air. You have to feed and clothe yourself (unless you plan on dying naked fairly soon!).

So step one
If she is paying you you need a contract signed and dated or you will fall foul later especially if the tax man doesnt know about it so declare it. If she isnt then you need to get that sorted first

Right now that your financials are sorted out...aha they aren't you don't know what you should be paid do you? You are in for a shock.

Document exactly how much time you spend caring for your mum during the day. Everything from preparation to completion, teas coffee laundry the whole lot. Cleaning her house is something you do but if it is her house not yours add that in too.

Then see how much a live in carer gets paid and how much a visiting carer gets paid then work out what that would be for the work you do. Remember that THIS is now your work, take the emotion out of it and get that bit sorted.

Step two
Work out what respite YOU need. No worker works 7 days a week 52 weeks a year - it's not allowed (unless of course you're a familial carer 'cos we don't matter!!!hmmm no comment)

If you need two days a week or 1 week a month then find out what it will cost you.

Step three
Sit Mum down and tell her the truth. Don't mush it up. Just tell her that you are burning out. Tell her you are finding it hard to manage/juggle (not cope - cope is emotional) her your family breakdown etc. and that you need some space to think and to to act independently of her.

Don't take no for an answer keep repeating yourself if you need to. It is not going to be an easy conversation but if you don't have it your doctor will when he prescribes antidepressants for you - because that in your words is where you are heading

Step four
Have that glass of wine you promised yourself (unless you are an alcoholic in which case dont!)
Have a facial or a massage
Get your nails done
Buy a new frock/skirt/scarf/handbag
Go for a walk/drive
Feel the sun on your back or even the rain in your face
Learn to like yourself for you are clearly a good person - you now need to do right by YOU

PS In case you think I am horrible consider this...who will look after Mum if you have a breakdown?


Good luck sweetheart I fear you may need it but go for it you have nothing to lose and your life to gain back xxxx
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Try to get your mother to spend her money on her own care while you make the transition to taking care of yourself and your marriage which I'm sorry to hear is so stressed right now. You may even need to set a time limit for your mother to have things in place for her care and paying for it with her money for you cannot be the overly available free help anymore. You have your life and your marriage to deal with which is enough right now and she has the resources to take care of her current needs.
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Ruthanne - First, let me say how deeply sorry I was to read about everything you have been through and are going through. I can't even imagine it. Thank you for your response to my question. You are right about the 'taking time for yourself' thing and I definitely try to set aside time each day for that. As far as the marital issues, my husband is and has always been supportive of me and my family throughout all our crises. My fear though is that this may be too much and end up putting us over the edge. He has been wonderful with helping me deal with all this and having gone through a similar situation with his own mother, he understands what I'm going through. To answer your question, both his parents are deceased so my mom is the only 'mother' figure he has left. I know that the priority here is definitely in my mom's care and in treating the cancer with the hope that one day she eats on her own again. I am trying my best to please everyone and take care of their needs so that nobody feels neglected. The comment you made about 'letting him come to me' pretty much sums it up because it made me see that I can't do any more than I'm doing right now for everyone which I needed to hear. Thank you for giving me a new perspective on the situation. I truly appreciate it. Maybe I won't have a nervous breakdown after all.
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Okay I'm going to stand right up behind Countrymouse and be firm with her. If your mother can afford a home nurse or aide, she should be hiring one. You should not have to hover over her 24/7 to maintain her feeding tube. I am surprised that her health plan does not pay for at least a few home nurse visits to check on her and take care of the feeding tube - most plans seem to provide some home care (a few visits a week for a few weeks) even after fairly minor surgical procedures. You could check to make sure she's not leaving any paid home care benefits on the table. But apart from that, it doesn't need to always be you. You can tell your mother that a home care visit from a professional every so often is necessary to make sure everything is working properly.

I agree with countrymouse also - this is not the time to make any major decisions about your relationship. But do pay attention to the level of empathy and support your spouse is showing you around these issues. If he's not supportive now, he probably won't be supportive if you two get back together either.
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Ok, I'm going to be firm.

Your mother doesn't see the need to bring in anyone else because she sees YOU. Remove yourself from the picture, and perhaps things will be a lot clearer to her.

I sound as if I'm blaming her, or you, or both of you for this situation but actually I'm not - I don't think blame has anything to do with it, not when this is such a hugely emotional time for all involved. But the trouble with emotions is that they get in the way of practicalities, and only being practical will help.

If your mother has ample funds for her needs, there's your answer. She needs nursing care, and she can afford it. Speak to her doctor's team and say to them that SHE - note, she, not you - needs care and please would they advise you about what is available. Armed with this information, you tell your mother that this service is required, you will arrange it for her, and that it will cost $x. You do need her consent, of course, assuming that she has capacity.

What you need to get across to her is that although you love her and care for her you cannot do this on your own. And regardless of the state of your marriage, that is true: the level of care your mother probably already requires, and certainly will before long, is far too much for any one person to manage.

So the moral is: just for now, set aside the emotions and concentrate on the practicalities. And you can tell your mother from me that she should count her two HUGE blessings: one, that she has a loving daughter, and two, that she can afford high quality professional nursing care.

I'm sorry you're having to deal with relationship issues on top of this, and my only suggestion for that is - don't deal with it, not right now. Let it be and come back to it later, when you're not under so much stress. Hire your main help at weekends to free as much time as possible, by all means, but I don't see why you should let your husband get away with any kind of 'it's her or me' emotional blackmail that forces you to create artificial compartments in your life. You're supposed to be a unit, for heaven's sake, your troubles are his troubles and vice versa. This really doesn't sound like a good time for either of you to be making irrevocable decisions about your marriage.
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I've been looking into hiring someone but I'm afraid that might get pricey, and since I'm not working, this would be almost impossible. My husband is also going through some financial issues right now as well. My mom certainly could afford it. She hires people to do other things for her,but I don't think it's about the money. She doesn't see the need for bringing in any one else nor does she trust anyone else. So that is my dilemma. I've already tried suggesting things but she won't budge, and it's only when I bring up hiring someone that the issue of money comes up. Besides, why does she need to hire someone when she's got me?
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sorry I meant to say my A.D.H.D step son
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Dear Diamondgirl: I looked after my parents for over seven years. My Mother had Alzheimer's, my Father could not live without her, and stayed with her in the home. He soon developed a form of Leukemia they both passed two months a part, to the day, nine years ago. I looked after my Mother in law, whom had had a stroke, and my Father in law, whom had had a heart attack (he later died), all the while trying to maintain a rocky marriage, I also raised my A.D. H.D. son while trying to run our ranch and kennel, AND work. You are NOT whiny! You are facilitating, and I had no help with either of my parents from any of my siblings, they just couldn't see her like that, nor could they constantly commute. What you are doing for your Mother, you will never regret. As for your husband, are his parent's still alive? One day he may need you, and you will remember the little sympathy and support he has given you, at a time in your life you most need it. Unfortunately the choice to facilitate is exactly that, a choice, and you chose to do it. It is humane, and the right choice. In my opinion. I do not know where you are from. I live in Canada. In Canada we have respice care. Where you can get a break from volunteers, once in a while. At night, or during the day, for a week even. Take the break when you can get it. If you have a home care worker coming in to bath or change her a few time a week, go out for a walk. But you need to get out a couple of times a Month just to gather your own thoughts and keep your own identity. If your husband can not help you, by at least giving you individual time that relaxes you, then let him be for now. You can not work on everything, the priority, in my opinion, and experience, needs to by, you first, your Mom second, and your husband third.

Here is why I feel that way. I was physically (from lifting, wheelchairs, and just plane burnt out) and mentally just recovering from my parent's death (I also lost a step brother, a brother, a stepmother, a nephew, and bio Father under much dysfunction in this time frame) under Doctor's orders. I was doing physio therapy, and moving forward, thinking myself of separating from my husband to gather my thoughts. I do not believe in divorce. We have been together 20 years.

My husband's Mother was told by the doctors she needed to have someone 24/7 and she ignored it, as did her two living sons. She continued, at 91, to garden, and weed. (she had a one acre veg. garden and a very large flower garden) Yet she had PSWs coming into her home because she could not bath herself. She ended up falling, doing what she was told she can not do, she broke six vertabrae in her back, they still let her go home (doctors), she is feisty and was walking with a walker withing two weeks, they were going to send her to rehab. I know the doctors thought the family would have her with 24/7 care, they did not. She ended up within four weeks back in the hospital for a week with a heart rate of 180. This time they told the family she could not go back to her farm. She then had congestive heart failure (kidneys were not functioning right) ...then a heart attack to which they put a pacemaker in, that did not work right...congestive heart failure again...then they found out her Thyroid was at 92...All the while she still thinks, close to 92 now, that she will get back to her old self and be able to live on her own. sorry I digressed, but there is a point.

I am the facilitator for her, how this happened I have no idea..I can barely look after myself, and I have made this clear to everyone. Doctors, PSWs, Nurses, I take her to her appointments, I am the one they tell she needs to be doing this, or doing that, it originally was only to be temporary. This is my husband's Mother, he was not there AT ALL for me through any of my grief or losses..He never understood why he should be, it was my choice, my family. Hmmmm. Now he is at a loss. When I leave him alone, on his days off, with his Mother, and take my time for myself (You must Diamondgirl take time for yourself, or you will loose yourself) He leaves her alone,because she frustrates him. He loves her, it is plain to see, but she is a strong willed woman. He says he needs me, but I have become part of his stress, his problem. I am one of the people that is telling him what he needs to do, and what he should not be doing (as I am instructed by doctors and PSWs) This may ruin our marriage totally. At this point I am not heart broken over it, I love him, I have made that clear to him, but he did not support me, and here I am for him, and I am the one doing it all again.

Your husband separated or not should be helping you Diamondgirl, if he loves you, if he cares about you, if he respects you, he should be there for you. What you are doing for your Mother, is your choice, but I understand it to be the only choice there is if you are a humane person. Look in the mirror at yourself and give yourself some credit, you have done so much, and although it may seem overwhelming, you will get past this. You will have your happiness. In the mean time though you need to take time for yourself. Money is often the problem. There is none in such situation. Which makes it even more overwhelming. Luckily this is Spring, and you have Summer and fall to get out to Parks to sit and watch the good parts of the world go by. Please take time for yourself and let your husband come to you if he wants time with you. If he doesn't he is not worth the time. If his parents are still alive, and he cares about them, ask him exactly what kind of woman does he thinks will ever be the person that makes the choices for family as you do.
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You're not being selfish, your concerns are legitimate. Marital problems are very stressful. Add having to care for your elderly mother on top of that and you're going to feel trapped and anxious. I would feel the same way.

You can hire a caregiver to come in to give you some time away. There are so many home healthcare agencies out there. Would your mom be able to afford something like that? If it's at all possible spend the money to do this. The feeling of being trapped won't get any better and is a sign that you need to get some time away.
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