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.
Don't shortchange what you are going through. It sounds very difficult to me to do what you do.
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.
It is helpful to hear from other people who are going through similar situations.
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!
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
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.
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.
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.