Considering caregiving for my grandmother.

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I am just looking for support outlets. Maybe other people who are also just looking for someone to support them. Well wishes!

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I hope not, AA7. :/ If what we said here scares this girl, she has no business whatsoever trying to take on the caregiver role.

Sydnie, I hope we didn't scare you, seriously. Well, actually, I hope we did on some level just to get you to think about all this. Most of us here are veterans in the care giver role. We've been at it quite awhile. We know the good, the bad, and the ugly. We've all been through our own journey and we've all been through the wringer. There's no easy street when you're a care taker. Nobody is trying to scare you off, we're just telling you to go into this with your eyes wide open, to think about what the caregiver role could mean to YOU personally...what it could mean for your own health, well being, and relationships. You need to know these things.

Every person here has a heart of gold. Everyone here is simply trying to do the right thing for their elderly charges. Every person here has had to deal with all kinds of ups and downs. When you're a caretaker of a very sick elderly person, it WILL take a toll on you, and you'll find yourself dealing with situations in the care of an elderly person that you've never even thought about doing. All we're doing is trying to give you a heads up, so that you can go into the situation with foreknowledge and forewarning, and not take this on blind, then realize that you're completely, totally and hopelessly overwhelmed...like so many of us are.

When I came here to care for my mom, I had a damn good job that I happened to love. Good pay, good benefits, a retirement plan. After awhile, it became almost impossible to do my job due to my mom's never ending health issues. I'm an only child, and I took on this role not knowing squat, not a single thing, about what it all would mean down the road... I WISH I would have been here, getting all this good advice, over 10+ years ago. I would have handled and done things a whole lot differently. I was devastated and scared shitless when I lost my income, my security, my future....bye bye.... The last 5 years I've taken care of my mom, I've been house bound with her, and almost totally isolated. I didn't have time for friends, and going out was became a memory. I've been staring at 4 walls in virtual isolation for these last 5 years. I've had to handle situations that I never even considered. One morning, I went into my mom's room and she had gotten her adult underwear off. There was feces everywhere, virtual sea of it. There were pools of feces, piles of it...and my mom had been rolling around in it and was covered from head to toe. I did NOT want to deal with this, I was literally gagging at the stench. But you MUST deal with just these types of things if they happen, unpleasant as they may be. If not you, who else? That wasn't the first time I'd had to deal with something like that, and it wouldn't be the last. My mom is bigger and heavier than I am. Thank God my son was there to help me hold her up since she could no longer walk or stand on her own. I was sweating like a pig and breathless by the time I got her, and the room, cleaned up. And things like that happened all the time, it became the norm. I went to the doctor for the first time in 5 years very recently. That's the first time I've gone for a check up in all those years. I'm NOT in good shape myself right now due to years of self neglect. Who has TIME to go to the doctor? If I had any time at all to myself, I snatched as much sleep as I possibly could. Sleep also becomes a distant memory if you're caring for someone around the clock.

Think about these things, think about not only what IS, but what MIGHT be. Nobody here, from experience, is going to advise you to go at this alone. You need a plan, and you need a TEAM. My mom has a host of serious health issues, including COPD, any of which could kill her...and really, should have by now. But she's still going at the ripe old age of 88. The care giving role can stretch on for endless years, the person live a whole lot longer than anyone would ever suspect. How my mom is still living with all of her issues, plus a blockage in her heart that's inoperable, is beyond me, but there it is. I've been wishing for her death for a long, long time. Not out of malice or spite, but because she's not living life, she's simply existing in it, and I want my FREEDOM back, my LIFE back, maybe the shot at having a man in my life...all of that was impossible in my own situation. Had I known in the beginning what all of these good ladies here are telling you now, I would have fallen to my knees and thanked God for the heads up. Things would have gone a whole lot different. At least now you have a shot at doing things the right way...by planning ahead, and gathering a team, and gathering knowledge ahead of time. Would that I could have had that myself...
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I started caregiving mom at age 23. Mom had the violent dementia. She had superstrength and was very scary at times. That was about 24 years ago, and mom just passed away this past March. It was a daily struggle to feed her, change her pampers, shower her, etc...13 years ago, she became bedridden and was still combative. I don't even remember when she become completely vegetative state. Then 2 years ago, father had a stroke from the stress of being the main caregiver. So for 2 years, I was taking care of 2 bedriddens. My father sounds like your grandmother. He's beginning his dementia. We are constantly struggling. He wants things done HIS way. It doesn't matter what the doctor or the herbal pill bottles says. HE Knows Best. Because I don't do what he wants, he tends to hit me. Most time, because I have slow reactions, I can see the punch coming but I'm too slow to dodge it. He even almost had my eye glass fly off my face...And one time, because I refuse to do what he wanted (he is ALWAYS RIGHT), he tried to strangle me.

Sydnie, I'm not trying to scare you. But I would like you to know that others have been in your shoes (and at a younger age) and what we have gone through in the name of caregiving our parents.

Please, please just hop around this site. Learn what you can. Jeanne is sooo right. There ARE other options for your grandma. You can still be there for her. You have some college background. Remember your courses where you had to research on a paper? Why don't you make caregiving as a Term Paper. Read about the pros and cons, the different stages, the alternate solutions of caregiving. Make it a challenge for you to read up on it. Think about it.

And I totally agree - you WILL be needing help. Even with just father (full time) and I (have a full-time job and take over mom when I get off work and weekends), it was very difficult. Will GM accept government caregivers to come once a week to care for her? They do have these programs. Hence, my recommendation to please research caregiving and to hop around this site. Atleast, if you do this, you will go in with open eyes - knowing what's ahead of you.

When father found out mom had dementia, he retired. He started making phone calls. He was able to enrol mom in this federal/local program for the study of dementia - in return, he was given so many hours for caregiver respite and supplies for mom. He found the meals-on-wheels for mom Monday-Friday. He found from another program where they come once a week for 4 hours so that father can go do things and they will watch mom. Just do a lot of calling to see what your GM might qualify for. There's so many programs out there. Just hop around this site and you will find some that might be in your area.
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Sydnie, sweetie, I think StandingAlone and others are just trying to give you a "reality check" so that you go into caregiving for GM with eyes wide open. You can click on AC users names to see their self-written profiles that describe our caregiving situations. I am 2+ years into full time caregiving. I get through it one day at a time. Had I known, really known, what I was heading into, I don't know that I would've done it. It takes so much out of you. Maybe your situation is different. Only you can determine what is right for you.

And as far as wanting support, you will always find the most decent, understanding people on this very website and there are multiple chat threads that are simply for mutual moral support.

I certainly wish you all the best. You said your decision is made, you are going to care for GM. So just make sure you stick close to this site and these wonderful people. You'll come across things that are new and difficult, but its nothing that can't be overcome, and nothing someone else here hasn't already experienced.

(((hugs)))
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Well said Jeanie my sentiments exactly.
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Your GM "is very stubborn, complicated, opinionated, thinks the world owes her." She is two generations older than you, has had a successful career, and has served in the military. If you think it is "bullying" to be told something you would rather not hear, and it makes your heart race, I am seriously concerned how you will get along with ungrateful GM 24/7. What is the longest time you have ever spent in her presence? Is there anywhere in the trailer house where you can have your own space and "escape" from her once in a while? When you and hubby want to spend some private time together in your own house, how will you arrange that? How will you handle your GM's "bullying"? How will your husband cope with it? I hope you are thinking through the emotional aspects of living with someone who thinks the world owes her a living, and of watching someone die a drawn out death.
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Sydnie
Do you know what it is like to die from COPD? It's not quick and it's not pretty.
Can you watch the coughing and choking and deal with nasty sputum. Will you stand by when grandma takes off her oxygen to smoke. It's pretty scary stuff. She will continue to go back to the hospital, that is just the way it is with COPD. I am not implying that you don't have the back bone and determination to do the job I just think you may not know what you are letting yourself in for. Dying from COPD is not quick nor is it pretty. SA has strong opinions but she has nothing to gain by bullying. At the very least get hospice involved at home. grandma's Medicare will cover the cost of that and you will have expert advice available day and night. May God bless you and give you the strength you need.
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Sydnie,
StandingAlone is telling you the truth. Your intentions are noble but there is a price to be payed. You say your mother and stepdad were caregivers? Go back and really talk to them about what it was like. My advice would be DO NOT accept 100% responsibility for your grandmother. You can still be a loving and caring granddaughter and help in every way you can without it consuming your life.
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Dear Sydnie, We are all here to support you, but I hope you reconsider your decision before moving forward. You have already seen your family members taking care of other elders, and the time and committment it involves. You have indicated you want to continue your education, that you were blessed with a second marriage and you want children as well. Those are big ticket items that also require huge time commitment. How much can one person do? You do have your youth and energy, so that is one plus I can think of. On the down-side, you have serious health issues of your own, which will most likely be affected by the stress of caregiving. Please make sure that you have alternate support resources in place to allow you some regular respite. You have also mentioned that your husband says he is not sure how he feels but supports you, but you are not really 'feeling' the support. As much as you love your Grandmother, this is a huge life-altering committment, and I truly believe your marriage commitment comes first. It is possible that your husband may be feeling some undeclared misgivings about this undertaking, so as Macada said, you really need to have a deep heart-to-heart conversation with him, examine all the pros and cons. Your Grandma's care could take another twenty years of your life, and you need to be assured of solid support primarily from your husband. Blessings to you for your generous and loving nature, and I hope everything works out for you.
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Sydnie, you've already made up your mind. Did you take into consideration the kinds of things StandingAlone said? Because even if she wasn't answering what you asked, she was telling the truth as it applies in many cases.

I don't understand why GM's only options are Hospice House or a family member. What about assisted living? What about a nursing home? And I don't understand why she would have to sign over everything to go there. Medicare pays for hospice care, and if she has been paying rent, can't she use that money to pay the rental part of the hospice house, the part Medicare doesn't cover?

Have her doctors said she is ready for hospice care? You can also get hospice care to come into her home (your rented trailer) and provide assistance there.

Does Grandmother love your dog?

Why is it a problem for Grandmother to use up the rest of her assets on hospice or other care? Are you considering this in order to save her money for family to inherit? (This is not a criticism. It just helps to understand the whole picture.)

What does Grandmother want to have happen now?

If you've made up your mind even though your husband is not fully committed to the idea and you don't sense his full support, and even though just reading about what often happens to very young caregivers of very ill elders makes your heart race, then I wish you well.

Come back and post often, letting us know how this is working out for you, and asking specific caregiving questions as well as sharing the successes you are having. We learn from each other here.
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It sounds to me like you have thought about this alot, and have made a good start on your plans. You also seem to have some back up for the begining. I got sprung into taking care of both my parents about 3 months ago. My husband was not totally on board but is hanging in there and getting better at it. Go for it, use the back up you have when you need it, and you can re-evaluate when you need too! Good luck. We are doing OK so far (not always easy, but we expected a learning curve), so will you!
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