RSS Feed Print
3 of Bills daughters want Mayo evaluation?
Bjblyghtnin
Posted: Wednesday, June 3, 2015 5:31 PM
Joined: 7/9/2013
Posts: 3205


Bills daughters were here last night, we went to eat. Today they took him riding in their car. When they got him back home, they talked about when they were kids. Bill who speaks a lot of gibberish, was speaking perfectly. You could see he didn't know what they were talking about some of the time. He is stage 5/6. Then they were wanting to get a medical release of his records. And then I am to put him on a plane to MN and they would pick him up at the airport, then they would take him for evaluation at Mayo. Now, he was DX with Vascular Dementia back in 2011, then 2 years ago this month he was Dx with AD. They hardly ever called him, maybe 4 times a year at most. Did not return his calls all these years. We were married 15 years ago this past Monday. Now all of a sudden they are interested. Oldest daughter is leading this. They did come for Thanksgiving 2 years ago. I don't think I need to be worried. What do ya'll think of this.
Bonnie

Mulelady
Posted: Wednesday, June 3, 2015 5:51 PM
Joined: 7/21/2014
Posts: 1164


Bonnie, I think they need a few more days with Bill. He will get tired and fall back into his normal condition. Take some time off and go somewhere, do something and let them do the caring.
They will lose interest quickly. In the end, it is your decision how you will handle it. By the way, do they intend on paying for all of this?
Good luck, Leanne

jfkoc
Posted: Wednesday, June 3, 2015 5:52 PM
Joined: 12/4/2011
Posts: 19546


You can tell them that they can come and pick him up and then be prepared to stay in a hotel with him for 5-10 working days.....that is what they tell you....then they can bring him home. The expense alone may stop this. OH, You could add that he is incontinent so they will need to change him. If this is not true you could make it up.

Now if all of this is fine you can tell them you will talk to the Dr about it.

HIPAA release? Probably too late for your husband to sign off on this.


dayofhope
Posted: Wednesday, June 3, 2015 6:52 PM
Joined: 12/6/2012
Posts: 1249


Bonnie, that has to be aggravating. Too little, too late, I would think. It is easy for children, even grown children, to get emotional and concerned when they are face to face with their parent. Especially if they are reminiscing about the good 'ole days. Throw some guilt into the mix, perfect design for their good intentions. It could be a genuine feeling, but a passing one. Otherwise, what does Dr Phil say, 'past behavior is the best predictor of future behavior'.
If it were me, I would just tell them, let me think about it, I'll get back to you. I bet when they get back to their lives, it will be put aside in their minds quickly.
What can the Mayo do that other clinics can not do? Sounds rather extravagant to me.

I've heard my DH speak well in front of others too, then hallucinate from the exhaustion of the effort later. Who really pays the price of good intentions?

You are doing just fine taking care of him. Don't let the daughters raise doubt.
Take care..
Tanya


lmms
Posted: Wednesday, June 3, 2015 7:03 PM
Joined: 7/26/2013
Posts: 68


I agree with all of the replies you have received. My husband acts like he is back to his normal self while he is at his mothers house for lunch. That is usually about once every two weeks. He is 64 with early onset. She has no idea of the horrors I live with day in and day out. Quite frankly I have felt like it was my duty to protect his 85 year old mother. She is constantly thinking that I am not a good enough care giver. The girls need to spend more time and see the true shape their father is in and then they will probably start to appreciate you. Are they seriously thinking he can fly on his own? If he is flying with them they will never make it to their destination. Keep your cool.
Bicoastal
Posted: Wednesday, June 3, 2015 8:08 PM
Joined: 11/30/2011
Posts: 269


Distant children swooping in wearing Superman capes sounds eerily familiar, so I hear your frustration. I have been with my husband for 15 years, too, and you'd think from the way his kids talk that it had been only 15 minutes. And of course they know more from an hour with him than a mere wife could possibly know in a lifetime. If there is a way for the daughters to take full responsibility (as in you stay home or go to a spa) I'd say go for it - free respite care. On the other hand, seems doubtful to me that there's anything different to be done at this juncture and, for that reason, Mayo may very well decline to take him on. Even if they say yes, we all know what the waiting lists are like at good clinics, so it's not likely to happen any time soon and the daughters aren't likely to maintain interest for very long.





Lorita
Posted: Wednesday, June 3, 2015 9:34 PM
Joined: 12/18/2011
Posts: 12792


Hi Bonnie,

How long are the daughters going to stay? Even if it's for a day, there's surely something you "have" to get done so you won't be at the house. Let them care for him the whole day and they'll begin to change their tune.

For some reason, they're able to "fool" someone for a while. I've found that out from the results I get from people coming to check on my sister. She can act completely normal and give the correct answers for a few minutes. Mother, who had AD, could do it, too.

I agree, his treatment plan is up to you - and what could the Mayo Clinic do - there's really nothing that can be done. Sounds like they're doubting the diagnosis.

If they're there tomorrow, let them take over the care for a few hours, then they'll know what you live with day in and day out.

Let us know how it goes.


Bjblyghtnin
Posted: Wednesday, June 3, 2015 10:27 PM
Joined: 7/9/2013
Posts: 3205


The daughters left about 4 p. I asked if they wanted to go eat. Oh no, we had a big lunch. One said we could go have ice cream, but her older sister said no. I figure they went to a Casino. They leave tomorrow for TX, their brothers daughter graduates. He was so good while they were here, he fell onto the dresser just a few minutes ago, and has spoke a few words of gibberish already. Why couldn't he do that in the brief time he was with them? I tried to tell them he couldn't fly but they weren't hearing it. I was mentioning something I learned on message boards, well you can't believe that, people write anything ( oldest daughter). You can only believe what is written in books. I just went silent, they didn't want to here anything I said. I wasn't ask to bring him to MN, only to take him to the airport. I can see him with his walker trying to find his seat, then when he has to go to bathroom on plane, getting his depends down. Then you have to get off and find them. He can still sign his name but would not understand what he would be signing. I think you are right about that Jfkoc.
Thank you for all the replies, I feel like I've come home when I am with my e friends. 2 years ago his MRI showed 5 mini strokes, Mayo can't erase that.
Bonnie


Mrs. Braxton
Posted: Wednesday, June 3, 2015 10:46 PM
Joined: 9/12/2012
Posts: 929


Remember this:
Ace trumps King
Wife trumps children
My step children tried to stop him from moving to AZ with me.
They have a lot of nerve. Well I sent my DH to stay with them like in stage 4.
They sent him back happily. He kept running away to find me. 🏃🏃🏃🏃😃😃
Ask them to stay and care for him or send him with them . They will be back before he gets on the plane. 💕💕💕

dayofhope
Posted: Thursday, June 4, 2015 8:07 AM
Joined: 12/6/2012
Posts: 1249


Bonnie, I'm going to be one of those people that will write anything...hee hee. I'm glad you stood your ground with the step daughters, it will be interesting to see how long before they check on their father again. Another 4 months? Yes, sounds like your Bill is much like my DH, he (and you) will probably pay the price for the extra effort he put forth.
You mentioned his being dizzy now, my DH has had damage in the cerebullum dera of the brain, which controls motor skills and balance, that is why he is so dizzy. He also has significant shrinkage, which can effect balance. We have tried every medicine under the sun, no change. He has had multiple small strokes and a large stroke when he was 57, now 72.
I can not imagine how that must feel, to be constantly dizzy. I do hope your dear Bill isn't beginning to have that problem.
May I ask, how long has he been incontinent? I hope to skip that step, like I have a choice in the matter. We seem to have a lot in common.
I hope you have a better day without the company around.
Take care.
Tanya


Bjblyghtnin
Posted: Thursday, June 4, 2015 2:29 PM
Joined: 7/9/2013
Posts: 3205


Tanya
He started with dribbles about a year ago. He still goes on the toilet, but is more advanced now. I don't know if the dizziness is his vertigo, which he hasn't had trouble with in at least a couple years. He does have quite a bit of brain shrinkage. It maybe part of the VasD. He has had at least 5 Mini strokes as of 2 years ago.
I called the VA about them wanting me to put him on a plane to MN. He said who would he go with? They want him by himself. I was asked could he take care of himself? Could he walk thru the airport? Could he change planes by himself? NO. He said it would probably be considered abuse. And that I am POA, they have no say.
He was already speaking gibberish last night. Went to bed about 6:00, slept till about 11. Ate, took pills, went in to get dressed. Went to sleep, is still sleeping. Just wore him out.
Bonnie

Lorita
Posted: Thursday, June 4, 2015 3:16 PM
Joined: 12/18/2011
Posts: 12792


Hi Bonnie,

I know you're relieved they're gone and so probably is Bill, if truth be known.

I'm a fine one to talk - can't even take care of my business but - I'd just drop it and never mention it again. If they persist, tell them you talked with the doctor and that he can't fly by himself but if they want, they can come and take him back. Bet a dollar they wouldn't do that.

I agree with Angela, you have the POA and you're the wife so what happens is really up to you.

They can manage to make people think they're better than they really are for a while but it must be draining. Hope you both can get some rest.


dayofhope
Posted: Thursday, June 4, 2015 4:58 PM
Joined: 12/6/2012
Posts: 1249


Bonnie, wouldn't that have been awful, you having abuse charges against you. I'm so glad you followed your instincts by questioning the wisdom of the daughter's request. Yes, your Bill is following exactly like my DH would do, becoming exhausted from trying to be or act normal. Sleeping more, I find it doesn't take much to wear my DH out. I took my mother to a doctor today, usually these trips will cause hallucinations many hours later for my DH. Even though all he does is ride in the car, then wait on us. I have to flip a mental coin, who do I stay with now, my 85 yr old mother in the doctor's office or my DH in the waiting room. I learned the hard way, I have to be with my DH, and hope my mother is understanding what the doctor is telling her. She does fairly well, pretty healthy, but it isn't easy either way. Someone loses out. I've had to limit visiting numbers of my family as well, my home was the center of our gatherings. It makes me lonely for my siblings but I don't have a choice, or he pays the price, nothing fair about this at all.
Take care. I hope Bill rebounds quickly.
Tanya


Mulelady
Posted: Thursday, June 4, 2015 8:59 PM
Joined: 7/21/2014
Posts: 1164


Bonnie, Hold your ground. They will not be back. You probably won't even hear from them again unless they want something. Poor Bill is probably exhausted trying to be what he is not. Leanne
Bjblyghtnin
Posted: Friday, June 5, 2015 12:13 AM
Joined: 7/9/2013
Posts: 3205


At least he got 2 meals and his pills in today. He was seeing bugs in his room today.( no we don't have bugs LOL)
Thank you everyone for helping me see that I wasn't all wrong on this.
Bonnie

milmac111
Posted: Friday, June 5, 2015 9:20 AM
Joined: 10/2/2012
Posts: 1283


Tanya, I am in much the same place as you are. I care for my 90 year old mother, who is failing fast. I also, care for my dh, Mac, who is in stage 6/7 Alzheimer's. I have done the juggling act for years now. But, it has come to the point that I can no longer leave Mac. He recently took a down turn and I am not sure if he will be able to return to day care one day a week. So my options on doing things have become drastically restricted.

The thing we came up with is the senior shuttle to transport my mother to and from Dr. appts. The men and women that work for this transport service are very good at seeing her into the proper Dr.'s office and picking her up there and returning her to the front door. She is fragile and weak, so she needs extra care. This is all done with much professionalism. The doctor has made sure that I am notified of any suggestions or changes in her care via phone or mail. I hope you can work this out as your dh will soon be unable to sit in the car unsupervised. His behavior also may no longer be suitable for taking him in with you both for the visit.

Bless you, and stay strong,
Milly

milmac111
Posted: Friday, June 5, 2015 9:45 AM
Joined: 10/2/2012
Posts: 1283


Bonnie, I am really sorry that Bill's daughter's are putting you through this. I am sure their concern that everything that is being done is in their Dad's best interest. Being long distance has not allowed them see him and his daily decline. That is all I can say in their defense.

You are his POA, he chose you for this. So you legally are the one responsible for all aspects of his care. I know from reading your posts that you have agonized over his care. I would send them a copy of the doctor's recommendations regarding traveling alone, and then the ball is in their court. The others here have given you much ammunition if they persist beyond that point.

I might also offer to let him have video chats with them as often as they wish. Yahoo, Aol, and Skype, and I am sure all the other common search engines provide this in their chat rooms. If your computer does not have a camera, they are very inexpensive to purchase, and easy to add to your computer.

I wish you well, and hope you can allay their concerns.

Bless you both, and stay strong,
Milly

Bjblyghtnin
Posted: Saturday, June 6, 2015 12:03 AM
Joined: 7/9/2013
Posts: 3205


They have just suddenly became interested in his care. They each call on the big holidays. Birthdat, CHRISTmas, Easter, and Fathers Day. He won't hear from them till Fathers Day.
Bonnie

Kairn
Posted: Saturday, June 6, 2015 1:41 AM
Joined: 10/2/2012
Posts: 484


something that hasn't been mentioned....remember the member who's step kids got the father to change everything over to them and even filed for divorce if memory serves.
I wouldn't let him out of my sight with them, much less out of state. That's just my two cents worth, adjusted for inflation.
You can tell them you've decided the trip would be too hard on him and that you are satisfied with his doctor. The end.

King Boo
Posted: Saturday, June 6, 2015 7:22 AM
Joined: 1/9/2012
Posts: 3419


It is always stressful when someone second guesses our care decisions.
As long as your husband is receiving good medical care, I would not allow him to go on a plane to a new surrounding; that alone is probably not a good thing for someone Stage5/6.

Unless you feel there is the need for additional medical input (then you should choose the facility and go with him), this would be a stressful upsetting time for him. I would also not want to relinquish care of him for that time period, to family members that have had a sporadic pattern of contact. As others have pointed out, sometimes family members have engineered "takeover" plans with shady professionals to revoke POA's, etc.

It is possible that the children also realize that time is short, regret their lack of contact, and are impulsively now deciding to spring into action (in the wrong manner, but........). I would just thank them for their concern and thoughts; express how very much you and hubby loved seeing them; hope they can visit him more; but everything is under control with great medical care and it is not recommended (perhaps by the MD?) to travel. If they persist, you can say you can't allow it, it is not in hubbys' best interests.