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We are taking care of my 87 year old godmother, who I am her POA, and she has been like my mother my whole life, as my real mother was very ill since I was young and she passed away in 2003. I feel my godmother is in the early signs of dementia. Her father had dementia, and her younger brother just died from alzheimer's last year. She lived in an assisted living care/retirement center in PA for 3 years near me and I went to see her at least 2-3 times a week, but it was very expensive for the care I thought she was receiving, as I had to take her 4 times to the ER where she was admitted each time, due to the nurses at the retirement center did not notice she was sick! Since my partner and I are on SS disability ourselves due to chronic back problems and fibromyalgia, we moved to FL to get out of the Northeast cold winter months.

My godmother was never married, and her other brother only visited her 4 times in the 3 years she was at the retirement center, and her nieces and nephews never came to see her at all. When we decided to move, we never once thought of leaving her there by herself in PA, and since the bad experience she had at the retirement center, we decided to rent a house big enough for her to stay with us, and we have visiting nurses coming in 2 hrs a day to bathe and dress her.

Unfortunately, she has gone down hill very quickly and now needs someone with her 24/7. She has fallen 3 times and we have a monitor set up so I can hear her during the night if she tries to get up to go to the bathroom, but there are some nights she has me up 2-3 times and I am losing a lot of sleep. She got very upset with me when I bought side rails for her bed, as I am afraid of her falling. I have been so stressed lately, on top of my chronic back pain, I am now having stomach problems, which my doctor told me is due to stress.

I have family who just moved down here also from SD before we did, and they too were very close with my godmother years ago, but have not seen her in 5 years. At first they told me they would help me and watch her for us, but I feel since they see how she is now, they have been ignoring us and do not offer
any help. There are days I am ready to pull my hair out, and I hate to even admit it, but I am also starting to feel resentful as the only time we get out is to go grocery shopping or to Dr. appointments which means one of us stays at home with her, unless the appointment is for her. If I suggest to take her out with us anywhere, she tells us she does not want to go along, that she is too tired, or she wants to watch TV. I really do not want to put her in a nursing home, as I know she would not be qualified for assisted living any longer, and I am afraid of the quality of care she would receive, and yet if I take her to someone who does respite care, they want $120.00 a day, and with her already paying for nurses to come in everyday, it is getting very expensive! We just need some advise and help!

Thank You!

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You are not being horrible for just needing some down time. This is a horrible job to do 24/7, I did it for 8 years and then began having panic and anxiety attacks. The stress was so bad I was hospitalized. I would say to pay for the respite care and give yourself some time away. Call your relatives and just ask if it would be possible for them to care for her one evening so you could relax. They may surprise you and say yes.

If you are seriously thinking about a nursing home, start looking now even before you are ready. We found out the hard way that there were no beds available for my mom. That was frightening knowing she had to be placed somewhere and there was nowhere available that accepted insurance.

Remember that if her money runs out you can apply for Medicaid to pay for the nursing home. Perhaps you should speak to an Elder Law Attorney and he could help with figuring out her finances and even help to apply for Medicaid.
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There are many wonderful nursing homes out there and she would get really good care. It takes a while to find a good one. She needs that care and you have really done all you can. Best of luck
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In response to carebill, I know that following Doctor's advice is good, the point I was trying to make is that some Doctors do not realize what caregivers go thru, and I personally do not believe in running away from difficult situations.
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If you are caregiving 24/7 you need weekends off and a week of every two months.
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care giving is very lonely ---can't find people that are easy to connect with friends have all died no groups to meet up with in person feeling very isolated
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You're absolutely not being selfish.
I cared for my Mom for 14 years, and there were many times that I wanted to "run away" from everything and escape to a tropical island to be alone.
Being a caregiver can slowly grind you down and fatigue you both mentally and physically.
When things start getting to you, arrange to have some "me time" for yourself.
It will help get you back on track.
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When I made my post 3 days ago, I wrote insured. Bad typing, I meant insecure. You are getting a lot of good answers. I hope you get some peace about this.
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Frankly -- responding to the last post -- I think it's "stupid" to ignore your doctor's advice, especially when a certain percentage of caregivers do not outlive the relatives they are caring for. The first rule of caregiving is to take care of yourself, and the second rule is that if caregiving is too much for you -- not everyone is cut out to be a caregiver -- you should seek alternate solutions.
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Miss Debbie, you are not being selfish. I am a respite in home caregiver, for an extremely special needs man, and have had the same feelings as you, guilt, resentment, stress, anxiety ect..My doctors advice for me was to move away, forget about my special needs relative and start my life over, how stupid is that. Like me you care very much for your family member and are doing all you can. I have taken two 2 week vacations, NY & FL, in the last 2 years. When I returned home everyone from family, friends, church members and even cashiers at the grocery store commented on how healthy I looked and what a difference in my all around attitude. I understand when family say they will help and don't, because of the amount of care your Godmother needs. I have been doing respite care for 10 years now and recently I have taken classes in gentrology and aging process for mentally retarted, Alzheimer's/dementia. In other words how fast they go down hill which is different from a person without these disabilities. I would love to help you and your spouse out, and my fee is almost 2/3 less then what you pay now. This is only because I love what I do and I only do it for families who really care for their relative and deserve time to themselves, not for people who just do not want to be bothered with their relative and would rather go to country clubs everyday. I would be honored to offer a caring person like you a helping hand. God Bless, Patti
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Sometimes being a caregiver is just too much and feeling guilt over it, while normal, is pointless. I would say this even if we were talking about your actual mother, but when your own health starts to be affected by caregiving, it's time to consider a nursing home. [What good will it do her, your family, or yourself if you develop even more serious health issues over this?] I think it's wonderful that you've been so kind to this woman you obviously treasure, but you've reached your limit. You talk about expense as well -- is she paying for the nurses, or you? Again, it's wonderful how you're helping but I think the point has been reached when medicaid can pay for her care (in a nursing home) and you can use the money you've been spending for your own family's needs.

No one wants to put a loved one in a nursing home, but when you're reaching a point where you feel trapped and exhausted and like your life is no longer your own, it's time to explore options before your own health issues get worse.

It's tough, but in the long run she'll probably get better care than you and a couple of nurses for two hours can provide. And you''ll have your life back!

This is not selfishness, it's reality.

Try to place her where you can visit her regularly. She may adjust better than you think. She may be unable to see your point of view at first, but that may change.

Best of luck!
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You are NOT selfish.. She is 87 and has Medicare and likely qualifies also for Medicaid.. contact a Council on Aging or a Senior Center and ask for Assistance in either getting 16 hour a day assistance in care (you do 8 hours) or finding a good nursing facility.. she has progressed beyond what you can handle .. you physically and emotionally cannot continue to take on this much added care for her.. back problems (physical) and fibromyalgia (emotional/stress).. COA will have a list of reputable caregivers or her doctor may also be able to help.
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Partin, Don't let any one make you feel guilty. If you are like me, I have enough on my own. Making someone feel guilty is a tactic that insured folks use. Just realize that you haven't done any thing. You took care of her as long as you could. Be sure she is getting good care, and take care of yourself. Verna
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I too looked after my mom for years and now that she is in an assisted living home she is mad at me, I have a hard time going to see her, because she is so mad at me for leaving her there. I have break down about ever day my husband don't even want to take me any where because says I just am not in to , but I so want to enjoy life but my mom likes to make me feel guilty.
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Being a caregiver is a very rewarding job, but it is also a very stressful job if you do not have the help that is needed. My husband gives me so much joy because he has had such bad experiences in nursing homes. I would never allow him to be in one again. However, lately I am having major medical issues and I have gone from paying $15 an hour for 8 hours to now $18 per hour. The lady I now have has only been here a week and she is great. She not just helps me with my husband, but she works very hard. She showed me a reference letter and she had cared for a couple in their home and the son was very grateful. He speaks very highly of her and I do see why. If you can find the right person to come in, I think it would help tremendously. Good luck and take some time for yourself. I am now able to go back to our home in NC to check on it because my husband and I relocated to be closer to our daughters.

What I did not realize is that the children are young, 28 and 36. They both have children who are school aged. I now feel it was a lot to ask them to have to rearrange their lives to help us because the do have their own lives. One daughter is a single parent with two children (13 and 5 years old) The other daughter has three children (2, 6 and 8) Her husband is in the Navy and gone a lot. Our situation was stressing the girls and I would get angry. But once I stepped back, I understand because I was also the caregiver for my mother and they had to help me before they were adults.

Our new help, has helped me so I do not feel angry but understand they have their own family. The two daughters are his stepchildren. He has four older children and they do not even call to check on him. So again, I have to pay for the help, I need the help and I do not think about the money. We are renting a place that cost 3 times more than our home in NC and not as comfortable for either of us. We manage but we are going to go back home and I will seek assistance that I can pay to help me.

Be good to yourself and take care.
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Not at all selfish--more like, "self-preservation"!!
Do what's needed to make sure your elder is cared for properly while you are taking a break--whether it's for a couple hours, or a few days....you MUST take good care of yourself first, before you can do anything productive to care for others!
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I commend you for trying to care for your godmother. However if you and your partner each qualify for disability due to poor health, you may not be up to the task of primary caregiver. If there are enough funds to pay for 24/7 home health aides and you coordinate her medical appts, meds etc then perhaps you can go onward. If not, then the best thing you can do is sort out the nearby nursing homes and try to find a decent one. However, most nursing homes are far from ideal. But it is what it is and you are not selfish given your less than perfect health. To be a primary caregiver you need financial assets and good to excellent physical health as it is very, very physically and mentally demanding.
Good luck.
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I think you forgot about the one person you will be with for the rest of your life {you}. You have have to stop and think about you. you can love your god mother at a care center. please remember that you have one life to live and no ones life is more important then your own. take the time to fix yourself. Visit her and make sure they are taking good care of her so you can take care of you. find the person you lost along the way of being a caregiver. You may start to notice that most of your aches and pain come from stress. i have taken care of family for over twenty years and i am under forty years old. I had headaches that lasted for month and back pain ect. It was not until I was not taking care of my family that i started feeling better. with in a month I did not to take medication for anything the doctor said it must have just been stress related. I would tell anyone caregiving can make it to where you may need a caregiver yourself. I am just saying love and take care of yourself first then everyone's need come second.You can do it. I believe in you.
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I had to put my husband with Hospice. They came in 3 days a week. I took care of them the rest of the time. I got sick and was admitted to the VA in Oklahoma City. I had to wait until the Hospice people took him to a nursing home until I got out of the hospital. My sister called my children and then came in from out of state because of my illness. I as released on a Saturday. Hospice brought him home on a Monday. He died in his sleep Wednesday night. He was sleeping on a recliner because of his COPD I was sleeping on the couch. My son and daughter had the bedrooms. I wanted to sleep there anyway. When I needed to go to the store, I had to get someone in from our church. His son went out of town when he was in the nursing home and was not in OKC when his dad died. If you are keeping your Godmother with you, Hospice may be part of the answer. Verna
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You aren't selfish. I am a caregiver for my mother who up until a month ago was on a ventilator. I wasn't allowed to leave the house until my sister was home. Both of us were trained on how to suction her and monitor her ventilator. Unfortunately it took 7 months to get managed long term home care. Don't be so quick to put her in a nursing home, as they aren't the best. My mother was actually sicker in the nursing home and improved once she came home. Try to get home care, so that you can go out for a few hours, also respite care would be great if she is still mobile. If she qualifies for Medicaid, you should be able to obtain home services, before you have to put her in a nursing home. Good luck!!
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I have been praying too. Maybe I am not silent enough. I keep waiting for the answers. I would love not to talk to my mom. It would be such a blessing for myself and my family. I know I have that right to choose, but I have prayed for help.
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It depends on reasons and resources. Weigh out each. That is what I did in making the decision to discontinue the "enabling love" I had been providing my 80 year old mother. I simply Prayed, to God, looked deeply within my 'higher self', and remained silent while I listened for the answer. We, my mom and me, don't talk now...however, her health and desire to live, has somehow Miraculously improved. In addition, personal growth in discovering a Higher Purpose in Life is being accomplisher. Thank You. Have a Blessed Day in Every Way.
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Regarding her going places with you, you may want to consider the possibility you could stop taking NO for an answer. In fact, you might stop asking at all.

My mother is oppositional in general and particularly resists going anywhere. What works with her is to keep her clean, dressed and tidy at all times during the day. Then I just go to her and announce it's time to go out. In her case, the main problem was the anticipation and preparation. So now we just skip that troublesome step.

Blessings and luck to you and your loved ones in resolving this challenge.
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I too fell guilt for my mom being in an assisted living home, I want to bring her home but know I am not able to look after her by myself. She doesn't eat and want walk. I am the only child my brother passed about 10 years ago. Has two children but no help from them but when mom was at home they took or ask for money so there is no money for me to get help. Don't know what medicare will pay for so if anyone can give advise please do so.
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You sound like me! I have been caring for Mom now for seven years. She has been steadily going down hill. She refuses to leave the house, even to sit outside in the fresh air. It seems, the only thing she lives for, is visiting the doctor and sorting out her pills! I used to take the dog to the park a couple of times a week. That has now become once a month. I occupy my time, working in the garden these days. It's my only escape. I too wonder about nursing homes. Here in Florida I have seen way too much neglect. Likewise it is difficult getting any help. This is a Tea Party county! I have never seen such a bunch of tight wads. They refuse to spend money on any services for the elderly. God forbid, one of their own becomes in need of help! Its hard, when we see our loved ones declining. However, we also need to care for ourselves. I'm not sure what part of Florida, you live in. Try and find some sort of support group, even around here there are some.
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Perhaps instead of having nurses come in for 2 hours a day, you can have somebody come in for the entire day on Saturdays & Sundays so you can get out of the house & do stuff by yourself or with your partner. You can get away from the stress & frustration for a more extended period of time than just an hour or 2 a day. If you have someone come in 2 days a week for 8 hours, that is about the same as every day for 2 hours. You probably don't need help to bathe & dress her----you need an entire day to let someone else bathe her, dress her, feed her, get her to the bathroom, etc., so you can go do what you want to do away from the house.

It is not a bad thing to want to get away----not at all. I am currently caring for my 86 year old mother who is perfect fine mentally, but has severe spinal stenosis that causes her horrible pain, has affected her walking (she drags her feet because she has no strength, & it is extremely stressful to me. She doesn't listen to me----she does things she shouldn't do that exacerbate her back pain, like doing laundry & then hanging it on the clothesline, washing windows, pulling weeds in the yard, etc. I work during the day, so she does this stuff during the day & it is not safe, but she doesn't care. A few years ago, she fell on the ice & fractured her elbow & shoulder, had a total shoulder replacement & now she has very little movement in that arm. I QUIT MY VERY WELL-PAYING JOB IN NYC TO TAKE CARE OF HER. She doesn't get it that I cannot quit my job again if something happen to her, & if she falls & fractures the other arm, she won't be able to do ANYTHING. In this way, she is extremely selfish & it makes me very angry & resentful because she cares about nothing else but herself, doing what SHE wants to do, "to hell with the consequences". She complains & cries & tells all her friends & what's left of her family about how terrible her back is, but she conveniently does not tell them about the load of laundry she did & hung on the clothesline that day, or the bush she dug out of the backyard, or the windows she washed. I get very angry at that. She is doing things that make her back worse, not better. It's like I am dealing with a defiant little kid in an 86 year old woman's body.

So, I totally understand your need to get away for a while. You can only take so much before you break. And if you do break, your grandmother will end up in a nursing home no matter what because you won't be able to take care of her. I consider this my "cross to bear", since I never had any children. I guess there's a reason for everything.
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$120 a day is great, use your Mom's money for it and get at-home care if you can( keep a log of all spent with receipts, even for caregivers), and H*ll ya, I want a vacation too! Hey we are better caregivers when we get breaks, just like parents. I would highly recommend not sending her out, have someone in, or she will be brutal when you return with confusion. If you can find help, get away girl ! I pay $15 an hour for morning help and $12 an hour for 2 full days every other weekend to keep my sanity. If you are POA you can do as you please with moms money as long as its for her such as caregiving, supplies, recliners, tv, etc. Hang in there, youre the best for doing what youre doing!
PS we have nannycams for when we are not home, and the caregivers know it, if they dont like it, they arent good caregivers.
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The feelings you have are totally normal. I almost moved my mom in with me and I am SO glad I did not. She is becoming more hateful and complains all the time so I cannot imagine having that in my house on a daily basis. She finally moved in AL in March and is doing better physically. When I go visit she is a bear. You are not the only one who wants to get away and is resentful for taking on this caregiving role. I not only want to get away, I want to have no contact now. Three years of doing this and listening to the constant complaining and being ridiculed for everything I do has taken a toll on me and my family. First and foremost, take breaks. Hire respite care so you can go away with your partner for a weekend and rejuvenate. DO NOT feel guilty and do not worry about the money. When the money is gone, you will find other options. Take TODAY and get some rest and do not worry about the $120 x 3 days. That is only $360 for a weekend. You are worth WAY more than that! Get to scheduling that weekend get away....
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Being a caregiver is a demanding job for anyone. Contact your local Area Agency on Aging or Bureau of Senior Services. There are programs such as a waiver program that can provide more in-home care than what she is currently receiving. The waiver program here can also help to pay for assisted living, it may be that the waiver there would also have many of the same benefits. Ask about their caregiver support group, it does help to talk to other caregivers. Know you are not alone. They also have programs that provide some respite services so you can have a break. good luck
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My advice to you is you took on the responsibilities of being her POA and moving her to FL and housing her. She is now becoming more of a burden and you cannot handle the physical demands on you as well as not having any time for yourselves. Do I have that right? You have two choices. Either put her some place (it could be an adult care home staffed 24 hrs.) or continue trying to care for her. Only you knows how much you are willing to do, but it sounds like the demands are starting to affect your health. So decide whether your life is more important than hers and make a decision. Having lived in FL, there are really good nursing homes there. She could probably qualify for Medicaid, so start checking out places, if this is your decision. Best of health!
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You are not selfish. It's time to look into a nursing home. While it's true that some areas of the country have better nursing homes than others, with some checking you should fine one that is good. Visit them and don't just go on a tour. Watch the staff interact with the residents. You can learn a lot from that.

As getnstrong said, " Nobody wants to see the face of a "constant complainer" approaching their office, but a good nursing home is open to hearing legitimate concerns, and will address them."

So, place your grandmother and then be an active part of her care. Visit often and be visible. Make friends with the staff and only complain about real issues. Don't expect perfection but expect good care.

Do not feel guilty for what you are doing. Whether you pay for help to come in or place your grandmother in a nursing home, continue the care that you can give but don't destroy your own health.

Please keep us posted on how you're doing.
Carol
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