A unique situation, I think...

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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.

22 Comments

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.
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.
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.
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.
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!
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
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
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.
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.)
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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