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I'm an only child and a physician. My mom and dad live 4 hours away. My mom is in her fifth year diagnosed w/ vascular dementia. My dad is cognitively okay but multiple medical problems including heart and respiratory failure and a chronic leukemia that's getting worse. I took both my parents cars away over the past years- my dad has chronic narcolepsy and feared him falling asleep while driving. They lived in a independent apt. w/ private aides who were not nurses but very caring people, until one of them was arrested for forging checks from another elderly client. I had to go to their apt and review all their finances to make sure they weren't victims also. It was traumatic as they trusted this person and she was like a family member. The past few months, things have fallen apart. My mom fell for the 5oth time and broke her hip. she had surgery which took a month for her to get back to cognitive baseline, and had to go to nursing home for rehab. After 2 months, she could walk 10 steps. In the third month, my dad, partly from medical decompensation and I truly believe partly from stress of being separated from my mom, went into total heart failure and was hospitalized for 2 weeks. (Who is ever admitted for 2 weeks these days?!) I arranged him to go to rehab at her same facility which is excellent. Very caring staff and therapists, very clean and private rooms, nice facilities. Of course they hate it. My dad is angry over his loss of independence and takes it out on the caregivers at the nursing home. My telling him that you attract more flies with honey than vinegar, is lost. Now my mom exhausted her 100 days of medicare stay so they are paying for her to stay there because she can't go home alone and really she can't go home at all even w/ him at home..I contacted their bldg adminstrator and think I should call her again and say that if she wants to forbid them from the bldg so be it...I don't know what to do..my dad says they want his money and will never turn him away and it maybe true...(and also mom broke her other hip on a fall at the nursing home...thankfully nonsurgical.) The very wise geriatric family dr. who cares for them at the nursing home says there is no safe environment for them period...my dad also fell there because he said he had to go to the bathroom RIGHT NOW and no one came when he pushed the button so he went on his own and fell and cut his leg but luckily no fracture this time. My dad plans to go home and have private aides come supposedly 24 hours per day but I know that will last a week and he'll say he doesn't need them. Then he wants to bring my mom home, who can't remember for 10 seconds an instruction to stay seated, I will help you get up. Her hearing is awful and he yells at her for not having her hearing aids in and then he calls me upset that she won't listen to him. On my part...I am constantly interrupted trying to care for patients by their phone calls, I have taken off and rescheduled many patients to go intervene with various crises. I feel sorry after reading many of the posts here. I can still work but it's been a major interference. As for my own family, I have missed many of my kids sporting events etc. because of caring for my parents. I realize my story is not the most awful on here but appreciate the chance to vent. My parents raised me and were very good parents, and I feel it's my duty to assure they are cared for, but I honestly hope and pray I am not a burden like this to my children. My wife and I did buy long-term care insurance for ourselves last year, I hope we can continue to afford it. The moral of this story for those of you on this site is that if you think you have money, it's all easier...it's really not great because my dad could pay for both my parents to stay in full care for a lot of years but it doesnn't matter, they hate it and want to go back to their old life. Money doesn't buy you health or happiness. I feel badly for those of you that have had to give up your jobs. God Bless you and hope you get your reward for doing the right thing.

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My cousins, who live in Michigan and Wisconsin had a similar situation with my aunt and uncle in Florida. Uncle had Alzheimers, aunt was healthy but in her 80s and caring for him was getting to be beyond her--not according to her, of course. My cousins hired a geriatric csre manaher who found a care facility that my aunt found acceptable. She remained at home, bit went to the facility everydsy to care for my uncle. She died quite suddenly of a heart attack about a year after her husband went into care. My uncle lived for another two years, with his still managed by the geriatric manager and frequent, but scheduled trips from family. This was the only way evertone could keep their jobs and sanity.
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I am an independent caregiver, and have worked for my 89 year old boss for 3 years. She used to be fiercely independent, and honors as all get up. Luckily, she can afford to have 24 hour round the clock private caregivers to care for her in her home. She was in an assisted living environment, and just wanted to come home. She also broke her hip, and knew that the only way she could remain in her home is if she wanted to pay for private caregivers. She does, and she received excellent care. She is very well taken care of. She is also MUCH happier, and I love that she is able to be home. I suggest that if your parents can afford it, hire private caregivers 24 hours for your mom & dad. Let them go home to where the love to be. It will preserve their dignity, and their sense of independence. Now, just hire the right caregiver, and you have the issues of their aging much less stressful. Of course, make sure the candidate is reputable, actually CHECK the references, and meet with any potentials at least 3 times before choosing the ones that will be caring for your parents. Good luck!
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thank you, treatmenttime.We have most of those arrangements in place which was advised by lawyer as part of trust arrangements, but it's a good reminder to review it all and make sure it's up to date. I feel badly for those on this website who have given up jobs to take care of elderly parents. I am fortunate to have been able to continue to practice medicine and I know that my dad, and my mom esp. when she was cognitively intact, would have been APPALLED (her word!) that I was taking time away from patients to help with their affairs. So with that knowledge, I am trying to strike a balance between it all. My family has been very understanding; I just keep saying, they are my parents, they raised me, they put me through college and medical school, and now it's my turn to make sure they are cared for. So far, this week...it's under control!
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I admire you for what you are doing and because you have the heart to post your story to let us know that while it is easy to blame our situations on money at first blush, money really can't fix everything and even the most skilled person (you) struggles with the same things we all do. THANK YOU!
NOW, as far as you not being a burden to your children, that's in your control while you and your wife are healthy people and can plan and solidify your wishes. Don't wait a minute longer, get your Advance Directives, Living Will, POA, burial wishes, etc in writing and make sure your children know where to find it if they need it. Have a phone list of Drs and people you would want informed if you became suddenly ill or injured. My husband and I did not assume one would be able to speak for the other, so we have a POA that includes my adult son as 2nd on line. The other thing that does is if the decision is too emotional for my husband regarding med choices for me, he has a backup POA for me. Prevent your children having to make hard decisions at a horrible time. My dad did that for me and I can say that was the BEST gift he ever gave me. When we found out he had misdiagnosed, late stage mesothelioma (1996) and less than a year to live, he planned and paid for his funeral and clearly wrote out his final wishes. Asked me in writing to make sure on Christmas Eve every year his wife got 2 dozen red roses (til she got a boyfriend-so I only did it one year), and asked that I do NOT sue his Dr for the "emphysema diagnosis" 6 months prior, I wouldn't have anyway, but the decision wasn't mine to make. Don't wait another day, get this stuff done. It truly is the only way parents can make sure they aren't burdens. Good luck to you and your family. I wish I could help in some way, like you have helped so many.
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It took my dad 6 months of angry tyraids and accusations that we had ruined his life but now he feels he has made the adjustments and even admits he is happy. Having six other siblings to "help" with the decisions, caregiving, packing, moving, commuting, distributing, managing, etc. was just as exhausting, confusing and emotional. It was impossible to involve, consider and communicate coordinating with multiple generations of opinions, expertise and life experiences of individuals spread out over multiple states. My cousin who has lost both her parents, helped me put my situation in perspective: at least my parents are still on this earth and if I want to go to them and hold my mother's hand or give each of them a hug, I can. It's true no matter how the details exist, I'm still their child and they are still on this earth for me to behold, and I love them very much.
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6631wh, thanks for the update. I think that you are so wise to put this responsibility and concern into its own "compartment" and also take care of the other aspects of your life. (I think that is easier to do if one has financial resources. You are lucky that your parents can afford in-home care and that they accept it.)

In post after post we hear from loving sons and daughters who have allowed the care of a parent to take over all aspects of their lives. Their marriages are suffering, they lose their jobs, their own health is in jeopardy.

Caring for a spouse also needs to be somewhat compartmentalized, but that is a whole different kettle of fish. I can relate to your father's desire/need to bring his wife home. I hope that the two of them have many meaningful months ahead of them.
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Update---my dad worked very hard in 5 weeks of inpt. rehab with some wonderful PT's and OT's and went home today. I visited last week and was amazed at his improvement over 5 weeks. He uses his walker to go everywhere, even a few feet and follows all instructions of the OT on fall-avoidance measures. We went out to lunch and dinner in the pouring rain and he was able to maneuver his walker and ate well and we had a good day. I am not naive to think this will be permanent but I encouraged him to keep up his good habits at home to avoid a fall, a potential fracture, and an even longer rehab stay. I have discussed reminding him about this, with the private aides who will be staying with him.
Not unexpectedly, my dad arranged for my mom to be discharged from the long term care wing of the same nursing home, to home with him the next day (tomorrow.) I am not sure how this is going to work out. They have not been together other than visits for 4 months. My mom is very angry about having to stay in the nursing home while my dad rehabbed and I won't be surprised if she takes this out on him verbally at home. The situation is going to be a lot to handle for their aides. I told my dad that he is the one in the relationship without dementia so he has to bear the brunt of making things work out. I also told him this is their "last hurrah" in trying to live independently. My mom hated the nursing home environment as her dementia is moderate but not to the extent of most of her co-residents. She sits quietly and is happy alone, but couldnt be left alone as she would try to get out of her wheelchair (despite fracturing both hips...luckily so far she can't get up but is getting closer) so she had to be seated near the nurses station so they could monitor her, which I understand. I am hoping she will cooperate better at home but have urged my dad and the aide that someone must be in the room with her unless she is in bed w/ the bedrail up. Another fall and fracture = permanent long term care for her and I have told my dad this in no uncertain terms. I can't tell her because she doesn't understand or remember. So...we shall see. My dad's recovery makes me realize this may go on for months or years, so I have to prepare myself for keeping this responsibility "compartmentalized" and go on with the other aspects of my life.
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Braida, you can put Granny Pods in search and learn about them....really nice for our parents and down the road for us as well:-). Hugs
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I agree that money doesn't change how someone experiences their loss of independence and rapidly declining health. However, it does afford some very significant advantages that can make life for those around them much less stressful. As some other posters have said, setting boundaries for yourself is something that you can do more readily because you can provide care for your parents. Screen your parents calls if they're too frequent - they have plenty of help just a buzzer call away. Schedule your visits for when you can make time to travel - not for every 'emergency' that arises. I work in a senior community. If your parents' community is anything like ours, the staff want everything to work for you, too, not just your parents. Have a heart-to-heart with the nursing director when you next visit. Talk about what you consider an emergency and also ask for their advice in helping your parents 'settle'.
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Thanks for the comments.The support from this discussion group is valuable. I am definitely considering moving them closer. For sure with the next crisis which will surely come. I have a planned visit this Friday, so we'll see how things look in person - which I have learned is vital, because what they tell me on the phone is what they want me to hear! Also dad has a dr. appt. w/ hematologist today who I spoke with yesterday and updated on his medical conditions. He doesn't recommend aggressive treatments and dad and I do agree. We'll see what that evaluation shows!
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6631, I tend to agree with the moving parents closer to you. The reason is how can you travel fast to your parents when a real emergency happens and you are in the middle of an emergency yourself(patient-your children).
Suggestion: Hire someone that is close to you that can move in with your parents so they can get use to them,then they will hopefully want to move with this person back where you live. Hope this makes sense.
I've been looking into one of those "Granny Pods" for my Mom, have you considered that? Hugs & Prayers
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You might contact the local ombudsman. He/she can help your dad figure out why he doesn't like it there...and then work to fix the problems or help him figure out what to do next. You also might talk to the staff. He might like it better than he lets on.
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As you say, none of the choices are perfect, which is the nature of caregiving. I went through something similar with my mom last year; in the end I told her "this is not working out for ME". Parents sometimes mythologize their "independence".
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I appreciate all the suggestions. Weighing all the options, I am going to let them have this one last try at living at home with heavy duty utilization of aides. I have a planned visit coming up next week so if they are back home by then, I'll be able to see for myself how it's going. My dad says the dr. told him he can go home next week but apparently the social worker is telling him another 2 weeks. I don't doubt he hears what he wants to hear. Waiting for phone calls back from both of them to clarify. If their independent apt. bldg. does eventually deem them inappropriate for independent living, that will be my opportunity to move them where I live and deal with the set of challenges that will bring. It's obvious...none of the choices are perfect. As for calls, I have implemented with their aides that they text me instead of calling, so I can respond when it's convenient (unless it's an emergency.)
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6631, I agree that they have many reasons for staying. I guess you'll just have to take it a day at a time. Something I considered is that your father could fall if he is living near you as easily as he could miles away. So having him close is not going to increase his safety. If they have caregivers and enjoy their friends and doctors, it would take away so much joy if you did uproot them. Old people often have so little joy that it is a shame to take it away. If things change and get too hard, I know that you'll figure out what is best when the time comes. As Jeanne mentioned, your parents seem to be very well set where they are. I just hope you don't have to make too many emergency trips -- always difficult.
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I agree with the last post. Before my dad passed he made me promise I would give mom the best care possible. Of course I would have anyway. I have one sibling and it still functions like i'm the only child. They take no responsibility. I'm a type 1 diabetic of 25 yrs and somedays are diamonds and somedays are stones. Still I do my best to see she has the best care. I was talking to a friend of mine about moms needs and she said" You will either manage her or she will manage you" Make the choice. That was the best advice I've ever been given. I have recently moved mom two states away because i could not manage her long distance. If you are ever to have any degree of sanity you will move them near you and start managing them. Right now they are unable to manage themselves but yet they are attempting it thus making your life miserable. I'm sure you want nothing but the best for them. The decisions you will make will be no doubt different than they would make but always in their best interest. Let me encourage you....be strong and make the best decisions for them and YOU! Without you they are pretty much hopeless. With your help and them closer it would simplify a lot. You will eventually have to move them anyway. After my sister told me mom was failing terribly....she took too much of her time one afternoon, I decided to go get her for a visit and while here we looked at various locations and she asked what we were doing and I just told her I needed her closer to know for sure she was ok. She said Oh I can't move .... I said oh sure you can.... it will be a good thing for you. I have found you cant discuss the obvious with them just be kind and caring but decisive. It wont work any other way. I put it all in place and had her moved in 2 months......SHE LOVES IT! She is close enough to have breakfast with and has a caregiver(our daughter) in the afternoon and on weekends another caregiver. We have her one day a week for fun and frivolity! That usually consists of Beauty shop,Chic-fil-A,and walmart!!!! It will work but not without some bumps...but it will all be OK. It will be more challenging for your dad than anyone else but after he pouts he'll see how much better it works. They adapt like children.... its amazing. Praying for you. Blessings
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I agree with the last post. Before my dad passed he made me promise I would give mom the best care possible. Of course I would have anyway. I have one sibling and it still functions like i'm the only child. They take no responsibility. I'm a type 1 diabetic of 25 yrs and somedays are diamonds and somedays are stones. Still I do my best to see she has the best care. I was talking to a friend of mine about moms needs and she said" You will either manage her or she will manage you" Make the choice. That was the best advice I've ever been given. I have recently moved mom two states away because i could not manage her long distance. If you are ever to have any degree of sanity you will move them near you and start managing them. Right now they are unable to manage themselves but yet they are attempting it thus making your life miserable. I'm sure you want nothing but the best for them. The decisions you will make will be no doubt different than they would make but always in their best interest. Let me encourage you....be strong and make the best decisions for them and YOU! Without you they are pretty much hopeless. With your help and them closer it would simplify a lot. You will eventually have to move them anyway. After my sister told me mom was failing terribly....she took too much of her time one afternoon, I decided to go get her for a visit and while here we looked at various locations and she asked what we were doing and I just told her I needed her closer to know for sure she was ok. She said Oh I can't move .... I said oh sure you can.... it will be a good thing for you. I have found you cant discuss the obvious with them just be kind and caring but decisive. It wont work any other way. I put it all in place and had her moved in 2 months......SHE LOVES IT! She is close enough to have breakfast with and has a caregiver(our daughter) in the afternoon and on weekends another caregiver. We have her one day a week for fun and frivolity! That usually consists of Beauty shop,Chic-fil-A,and walmart!!!! It will work but not without some bumps...but it will all be OK. It will be more challenging for your dad than anyone else but after he pouts he'll see how much better it works. They adapt like children.... its amazing. Praying for you. Blessings
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Your father has more good reasons for staying put than the cases we usually hear about here, where there are no longer friends that visit, the doctor is not up on geriatric issues or the parent doesn't go to a doctor in any case, etc. Since there is money to pay for sufficient in-home care (also not always the case) staying where they are may be best.

In that case I think you need to set some boundaries. Unless it is an absolute certified emergency, you are only accepting calls from Dad or Mom between times you set. Have your calls from them screened. Again, unless it is an emergency, you will be visiting them in person on a certain schedule. You will straighten out any non-emergency problems then. Make sure that your parents and the home-care staff all know these parameters. Enforce them, even if it makes you feel like a heel at first.

Frequent calls are very common! And they are very disruptive to any career. Some caregivers get dismissed over this. I know a lawyer whose mother was in a nursing home and who finally had to take away her phone, and have all calls go through the nursing station.

I agree that you owe it to your parents to see that they get excellent care, and that their emotional needs are met to the degree that is reasonably within your control. But you also have responsibilities to your spouse, your children, and your patients. And somewhere in there you have to meet your own needs. Achieving some sort of balance means you won't always be able to put your parents first. Accepting that and setting some boundaries may reduce the stress.

Good luck!
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Those are good comments and advice. I have offered to move them closer to me many times. My dad has refused because he does have friends who visit him, take him out to lunch etc. and where I live he would know no one except for my immediate family. He also states, correctly, that he doesn't want to leave his doctors - and I live in a smaller town where for some of the specialists, we would have to travel an hour. Finally, the private aides who they do have are very devoted and my mom is attached to them and he feels it would be traumatic to take her away from that...also true. So, I keep managing things from a distance, for now. Your comments about magical thinking are exactly true about him. And yes,he is using a walker all the time, the problem now is the oxygen tubing, which is new and permanent, gets tangled up in the walker and his feet, etc...another new fall risk!

It is helpful to hear from other people who are going through similar situations.
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6631, If your dad isn't using a walker by now, then make it happen. That should cut down on the falls (if he uses it EVERYWHERE that is), and I agree with the others to move them both closer to you. Maybe the adult foster care option would be better than asst. living. Have you ever been on a really bad vacation, and all you're thinking is 'I just want to go home'? Well that is how your dad is feeling. He's just sure that if he goes home, everything will be back to 'normal' and this nightmare will be over. I wish it were so.
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JessieBelle and I often think alike. Before I read her answer I thought a Care Center close to you. Or maybe we both came up with that because it is the obvious answer. Not a good answer -- there are no good answers when parents start to decline. But maybe the least bad answer.

In her very excellent book, "Loving Someone Who Has Dementia" therapist Pauline Boss writes about the myth of independence. She says "Most of us will eventually become either a caregiver or a care receiver, and when we take on either of these toles, independence becomes a myth." I think you are at a crossroad where interdependence takes on far more value and significance. That will be much easier without a great distance getting in the way.

I tend to think that having money is better than not having money -- so many more options are available. But you are right, having money doesn't make any of the options more acceptable, or the decision-making process easier and less painful.

Best wishes to you and to your family.
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6631, you are going through much of the hardship that many of us face. It is so difficult to take care of parents when you are working, especially when you live some distance away. It can be a constant worry. I realize your father wants to go home. There is comfort at home, and sometimes I think there is also some magical thinking -- if I can just get home, then things would go back to normal. As people get older and the problems get greater, however, normal changes. One thing I wonder is if your parents are not able to go back to their own life, could you convince them to move to an AL facility closer to you. Having you and your family as visitors might make them happier, and it would certainly be easier for you (and your patients!). I imagine that things are going to become worse for them over the next few years, so it would be nice if they were closer to you. Just a thought.

Don't shortchange what you are going through. It sounds very difficult to me to do what you do.
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