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My mom had awful swollen legs from the knees down. Nurses would examine her legs with concern. FINALLY...FINALLY mom’s intern noticed. She has CHF and it had gotten worse. I was overjoyed that something was going to be done about it!

Since mom’s in ALF the saintly personnel did the mopping up. She’s so much better.

One person cannot care 24/7 for two infirm people. You can place one or the other, or get someone else to help.

Good luck with your MIA relatives!
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When I've had family conferences I put the out-of-state daughter on speaker phone so she can participate real-time.
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Well, it didnt go bad. My father understands my frustrations and he knows that i cant do this full time forever. My mother is hard of hearing so when talking with her it usually ends up with everyone yelling so i wrote down what i wanted to tell her so she didnt feel left out. She was very quit after but says she understands, but do we have to think about a nursing home. That she will try harder. I told my dad that its not about her trying harder. She already does everything she can thats its me, i dont have it in me to handle full time caregiver. Im a 56 year old single mom and thats what im good at. So we are going to talk to the hospice nurse when she comes in the morning and see what our options are. Also i think someone had mentioned a social worker, we have called hospice and they set up an appt for all us to talk to her. (I said my brothers too) so one of my brothers will be here my other brother lives 2000 miles away so ill call him and keep him updated. We need a plan before i can go on being me. I feel somewhat hopeful. Put ive always been the worry wart. They used to tease me and call me downer debbie because i had to analize everything. Its just something ive always done. Lol. I know the guilt is going to set in but im relieved that i was truthful and its not because i dont love them, its because i do love them.
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Dcurnan, channel your worries and thoughts about “what-if” and what might happen and what bad effects it will have on you into future planning and action. At this point, whether Mom is like a little lamb or a wildcat doesn’t matter. She needs care and tending and this situation is causing you undue stress and worry. Your heart is in the right place, but this situation is having a detrimental effect on your whole life. Is it time to tell yourself you tried to do what you felt was the right thing and it didn’t work out? Only you can answer that and also if it’s time to go down another path. Each day you stew in these juices and worry about what’s to come only makes it worse. Mom isn’t going to change or make it easier for you. Only you can decide what you want to do and then take your decision to Dad. Dad loves you and I’m sure he already realizes things can’t go on like this. It might go better than you planned.
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With my Mom we had to keep her legs up put a pillow or two under them. This did seem to help.
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In addition to calling the Areea Agency on Aging for advice about Nursing Home Medicaid when there is a community spouse at home, go to your State's Medicaid website. Most state very clearly what the asset and income limitations are, but remember that a community spouse can keep enough assets and income so as not to become impoverished.

And I'm so glad you haven't left your job!
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Don't consider giving up your job completely. Just don't!

I think you ought to start looking into Medicaid. Regardless of what happens next, it is going to cost money. I'm sure you'd like it in place, or at least know the process is well along before you go back to work. Start now. Call your Area Agency on Aging and see if there is some help available for getting the application ready. You may want to consider a lawyer specializing in Elder Law also (with your parent's money.)

As you say, a nursing home might be required even if that isn't what anyone really wants. You can only do so much. She can still be on hospice in a nursing home. (My mother was.) You and your dad can visit her there as much as you like, but without responsibilities for her care.

Mother is on hospice. She should be getting comfort care. Hospice is usually a good judge of what is comforting. And they are there to be comforting to the entire family. Don't be afraid to explain to them what bothers you.
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Weve talked about a nursing home but would she go for it? I doubt it. She is so mean sometimes and she guilts us both into doing things just to keep the peace. And 63 years and never been apart. I just dont know. She may not have a choice though. If it becomes too much for me then it might be the only answer. Ive taken a 6 month leave of absence from my job. Which just started recently so we need to figure so much out in a short amount of time. I couldnt give up my job completely. I just couldnt.
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As I understand it, if they qualify for Medicaid, Mom can go to a nursing home. Dad can still draw funds as the Community Spouse. Separating them might be a tricky issue, though. Could take a very diplomatic approach. Mom would get all the care she needs at the facility, and Dad would still be eligible for home health if he needs it, on his Medicare. I think this is the way it would go.
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Hi jeannegibbs. You raised alot of questions i need to think about. My parents own the house they live in and thats about it. And about 10,000 in cash. Thats about it. My dad gets his pension plus they both get social security. I dont know if they would qualify them for medicaid. Do you think its worth looking into? Would they have to give up hospice and home health care for my dad. And also does hospice mean the end? Sometimes i swear shes in better shape than my dad. Shes the complainer in the family. She always says i cant, i cant. So my dad does for her and its truly killing him. If i jump in she gets so mad. I dont get it. Does she want him to go right along with her? I swear sometimes she does.
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Hi jeannegibbs. You raised alot of questions i need to think about. My parents own the house they live in and thats about it. And about 10,000 in cash. Thats about it. My dad gets his pension plus they both get social security. I dont know if they would qualify them for medicaid. Do you think its worth looking into? Would they have to give up hospice and home health care for my dad. And also does hospice mean the end? Sometimes i swear shes in better shape than my dad. Shes the complainer in the family. She always says i cant, i cant. So my dad does for her and its truly killing him. If i jump in she gets so mad. I dont get it. Does she want him to go right along with her? I swear sometimes she does.
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I once heard one of hubby’s therapists say you never put Jobe or compression socks on someone whose legs/feet are already swollen. That sounds like what happened to your Mom. If it is CHF or Congestive Heart Failure, the best course is diuretics. Hubby is on diuretics. He also is bedridden so his feet are up all day. He no longer has swollen feet. Try keeping Mom’s raised a bit.

You are very welcome for the “honesty “. I’m glad you took it as it was meant. Come back here as often as you need to. Someone is here 24/7.
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Ah. I didn't realize that Mom is on hospice care. In that case I withdraw my question about the cause of the swelling. The task at hand is to keep her comfortable. It doesn't really matter much why the swelling is happening, does it?

Have you discussed the possibility of a catheter with the hospice nurse?

I think I can understand both guilt and love as caregiving motivations. Keep the love uppermost in your mind. Understand that there are a lot of ways to express love besides doing all the hands-on care.

I found that caring for my husband in our home on hospice a deeply meaningful experience. I had 32 hours a week of PCA help, and he was on a catheter the final few days. Having help certainly didn't mean I loved him any less, or make the experience less profound!

Your mom is on hospice. I would be inclined to advise you to keep doing your best and hang in there until the end. But you are also caring for your dad. This could go on quite a while. While you have access to the hospice social worker I advise you to start planning for the long haul. Would you do better with in-home help? Can Dad afford it? Would he qualify for Medicaid? As his needs increase, does a care center make sense?

You love both of your parents. That doesn't mean that you shouldn't also factor in your own strengths and weaknesses and needs when planning their care.

Keep in touch here. We care!
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We tried the compression socks first. They dug into her feet so bad the nurse had to cut them off. And because the nurse just automaically put them on her i wasnt taught anything about it so the next morning i called the nurse in a panic. She came to the house a few hours later and says oh my i didnt realize it was so bad. Thats when she said water pills are our only other choice. My mom does not move from the kitchen table all day. So even suggesting sitting in the recliner for an hour is out of the question. Or putting her feet on a pillow when sleeps. She wont do it.
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Also, hospice should have some counselors that you can talk to about your feelings of being thrown into the caregiving situation. Don't feel bad, you're doing the hard work. I wonder if compression stockings might help with the swelling? You might just ask.

My mom took a diuretic with her breakfast and would have to pee multiple times within the next two hours or so. She was able to go to the bathroom, but once those hours passed, she was OK for the rest of the day. {{{Hugs}}}
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I kind of figured you are doing this out of a sense of duty, like most of us. The only training out there is for CNA and STNA who are taking that training as a career choice. It’s unfortunate but true.

I have to say that as a registered nurse, Mom’s Hospice nurse knows exactly what’s going on. She may be prevented from discussing it with you by those privacy acts. But, she knows. What she gave you was a great non-answer answer. Call Mom’s doctor for the real scoop.

When we agree to be a caregiver, we do so with the best of intentions, but it doesn’t usually work out that way. When Mom’s aide comes, ask her to teach you how to care give. It’s her profession, after all. It’s how I learned what to do. My hubby is 350 pounds and the aides at his rehab were scared to death I’d wind up in traction from trying to turn him so they made sure I knew how to turn and change him. You can also speak with Mom’s aide and her nurse about your fears and stresses. See if you can get approval for her aide to come out more often, even one more time a week.

Don’t beat yourself up by saying you do t know what you’re doing. You are doing the best you can. When you feel yourself becoming overwhelmed, make sure Mom is ok for a minute and read a magazine, call a friend or listen to music. Give yourself credit for being a good person. There’s a very special place in Heaven for us.
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And thanks ahmijoy for being honest with me. Sometimes i take things people say as attacking me but i found your honesty with me very easy because its the truth. I may not be cut out for this but i owe it to them to give it my all. Does that make sense?
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I was guilted into taking care of both my parents. And im struggling so much. My momis on hospice. The rn comes once a week. The aide comes twice a week to wash her. Thats all the help i get. Except for my son who helps as much as he can im living something i never imagined. And why do i do it? Guilt for one and the love i have for these 2 people is undeniable. They have been there for me never questioning or complaining. I feel i need to give it my all. And also before i forget when i asked the hospice nurse why her feet were swelling she said her job is to make my mothers life more comfortable. And that was the reason i was given. Im sorry if i sound like i dont know what im doing, its because i dont.
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Dear dcuran,

I'm so sorry to hear about your mom's condition. I know its hard for you being the main caregiver.

Like Jeanne said I'm worried your mom might have congestive heart failure that is why her feet is swelling. This is very serious. Are you able to get your mom more home care or maybe it's time to consider assisted living or a nursing home.

I hear how burnt out you are and its really hard. I was there too with my dad. Looking back I wished so badly, I had found another options. I would tell my siblings about this or that and I had no support. Thinking of you.
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Did the doctor tell you what is causing the swelling? For example, does she have CHF? High blood pressure? The water pill addresses the symptom and reduces the swelling. Is the cause of the problem being addressed as well?
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Mom’s body is getting rid of extra fluid. I can tell you that as the diuretics take hold and do their job, she will stop urinating so often.

Dcurnan, it concerns me that this is your second post about your issues with changing mom’s adult diapers. Were you “guilted” into caregiving for her? Are you the only one available to take care of her, meaning do you have any opportunities for help at all? When you agreed to be her caregiver, did you have any idea what all it involved? Mom is not doing this TO you, you are doing this FOR her. She is not flooding the place to make your life difficult. If you’ve ever been on diuretics, you know when they kick in, they’re a force to be reckoned with. Caregiving is doing a LOT of distasteful stuff. While caring for Hubby, I’ve done everything from holding a basin while he vomits to scraping the dead skin off the bottom of his feet and everything in between, as have most of us here. You just gotta do it, Kiddo, and not concentrate on what you’re doing.

If you don’t think you can handle this task of caregiving, and it’s nothing to be ashamed of if you can’t, then you need to speak with family members, (if available), her doctor, your local area Agency on Aging, even your Pastor. Most of us never signed up to be a loved one’s caregiver and all that entails. It’s one of the hardest jobs ever and a lot of times, there’re no pats on the back. You need to get help, be it in the form of home health care, a relative or counseling to help you handle. Good luck and God bless.
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One solution would be to request a urinary catheter at least till the swelling comes under control. There are pros and cons for this , the main rist is UTIs but if you can't manage this is the only way to lessen the difficulty.
Is Mom ready for hospice? if she is they will take care of this plus send an aide in to bathe her several times a week. Think about it and talk to hospice. Mom's Dr has to order it but you can just talk to them.
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