My son is home from college and thinks it would be a great idea to take his father on a trip. Now, I do know what you all are thinking because my thoughts are the same. However, this is coming from love. Our son feels as if that his father should see his mother one last time. However, it is at least a 2 day car trip. My husband is in a stage 6 and I know how dangerous this could be for him, but I'm really worried about the safety of my son. He will be visiting the same family who has denied this disease for 3 years and only seen him once in the last 6 years.
So far I have been called every name in the book and blamed for my husband developing AD. To top it off, his DD, who couldn't pick up the phone to call him when she was in town for 2 weeks, said she'd love to make the trip too! I'm against the trip and my husband's doctors are against traveling.
If the Dr. says "No." it's on him, not you. As I told my DH's family, (I am Guardian)" I will, in consultation with the professionals invoved in his care, make the best decisions possible at any given time. If you can't respect my decisions as his wife, you will respect them from his Guardian." This is a hard one to deal with, but you have to keep in mind, your job is caring fo your LO. You are not and cannot be responsible for the feelings, unerstanding, etc. of the rest of the family. If you can offer information or reources, fine--but that's enough.
Ann, I would talk to the doctor and ask him if he would please tell the children that your husband can not make the trip.
A two day trip is hard with an AD spouse. They get confused and scared. They need their home environment. They are comfortable surrounded by what they know and see each day.
Can his grandmother be flown to your house for the weekend? Or do you not get along?
Thanks for all of the advice. I agree with each and every one of you.
I received an email from my husband's neuro who indicated that I now should let him go. He feels that he would do fine and it would give his family a chance to visualize the disease. Gosh.......I don't know what to think.
Grandma is 96 and battling her second round of cancer. She also has dementia, but according to the family it isn't Alz Disease. I don't believe that either. His mother is a sweet woman, but certainly doesn't understanding her son's condition.
I plan to copy all of your thoughts and keep them on hand. All good advice.
I don't think the doctors will talk to other family members without hippa ok. I like the consultation note from the doctors saying no to such a trip. My DH is mild to moderate and travel for him is a big decision for me at times depending upon where the trip is and how not only he feels but how I feel as I am the one who has to get him there and often I am just to tired for these long drives. If family wants to see him after all the trips over the years we have made, they can damn (oops) well saddle up and make the trip. As to seeing his mother for the last time..would he know who she is? In the phase he is he may recall her as a young mother not as and older lady as she is now..and would she know him and if she would how upset could this make her to see her son in such condition? There are a lot of factors to consider.
Also the hammer of Guardian is useful for those who tend to be unpleasant about such decisions made by the spouse.
I know this is probably a difficult decision and you have mixed feelings. The good thing about the trip would be that he will be with his son who hopefully is of sound mind and would take him to a hospital, etc. if he became ill and needed care that the son couldn't provide. If the son takes him I would require assurance that the son would be willing and able to pay all expenses for any care that would occur on the trip as well as paying for flying your husband home if necessary because of the stress of the trip to your husband and/or pay your expenses to fly to their location and return with your husband? Also, would the son be willing to stay with your husband if he became ill and was unable to make the trip back home in a timely manner? These would be my major concerns. You might call the son's bluff and tentatively agree to let your husband go with the above requirements written out and signed by the son. This might alert the son to the unknown factors that could happen on a 2 day trip and he needs to be prepared. The son needs to realize in BLACK and WHITE what his responsibilities would be.
I hate to say this but we all know this is a fatal condition and why not let him go and you get some needed rest. If your husband gets worse so be it (this sounds so awful to say) it isn't like he will get better by staying home and it could be a great experience for his children that could help you in the future.
I want to add this to my above statement. My dh's son also wanted to come and get my husband in California and take him back to Illinois. However, we found out the trip was not what had been expressed....it was to get my husband to sign legal docs. in favor of the son, etc. This prompted us to get an Elder Attorney and had trusts done so legal problems now or in the future would be difficult and expensive for the son.
I don't know, my DH's family members are so out of touch and in denial that I don't even think they would acknowledge his disease even if it was staring them in the face. I don't think it would be worth sacrificing my DH's saftety just to prove to his family that he is really sick. If they don't take my word for it and listen to what his dr. says that's their problem not mine. I am his Guardian like carosi said. Now, trying to do all that and keep peace in the family too?... that is another issue. Have you become his legal power of attorney yet? I did that just in case my DH's daughter tried to enforce something that I didn't want.
Mimi....I do think my husband would know his mother, however, I'm not sure she would know who he is.
JudithKB....I do have mixed feelings about this. I have talked to our son about what might happen should his father becomes ill or needs hospital care. He seems to think he can handle it. I trust our son.........he's doesn't have any other motive for this trip except trying to show his love for his father. He has a masters in biomedical engineering and actually worked on Alz Disease. Does that mean he really understands how to handle this disease? No, it doesn't. But, I do know that he feels that this is something he could do for his father. I also think he feels that it is the ONLY thing he can do. Keep in mind, he's young......and we all know how they think.
deb.........Yes, I have had POA for 3 years with my son as the agent should I no longer be capable of these duties. You are right.......I don't think his family will get it even if my husband spends the time nude.
I am going to make sure that should they go on this trip that everything is agreed upon should there be an emergency.
deb42657-- I have had DPOA for years and the Guardianhip since 2007. The first allows me to do all financials, the last holds me responsible for his care.
It is not our job to keep peace in he family. If we can do that--Great. If we can provide information, resources, and any other things to help promote that--also Great. If however, the family persists in denial, cuts off contact, or even actively interfers in our LOs care--things like that--- it is our job to protect and buffer the situation or our LO. We do not have to bow the family wishes, explain or defend our decisions, nor accept any responsibility for the family's views and/or actions.
As an example: If I leave my DH in the care of a respite provider and a family member were to stop by and ask DH to go to coffee--he'd go. Except, the respite worker is responsible and would have to decline the trip. Further, if DH got into the car and the family member took him anyway, Police would be called and they would be arrested for kidnapping. The trip was not authorized. It doesn't matter if it was a family member. As Guardian we have to determine what ios safe for DH, and make it stick.
I have a question about the Guardianship thing....Is this something we all need to have or is this something that is needed if there is a history of family problems? And if it is a necessary thing how does one go about getting this? Is it a court ordered procedure?
I don't expect problems but I do have step daughters who are supportive and I think DH's siblings would be ok and not interfere. How do we know if we need this?
Guardianship is not always necessary. Sometimes a hospital will request a Guardian be assigned if they don't deem the patient able to direct their own treatment (authorize and understand) or if there are questions of who can do it for them (lack of cooperation, ability to understand, or multiple members all wanting input). Probate Court has a procedure to be sure the "impaired" person is represented, is not declared incompetent erroneously, and then assigns a Guardian (a family member or unrelated person). The Guardian acts on behalf of the person and makes decisions for their care. If the Guardian is also given Conservatorship, they would have the same financial controls a DPOA gives.
In either case the Guardian (w/wo Conservatorship) must report to the Court periodically on the care for the person.
If you need Guardianship, your lawyer can file a petition for it. An ad litem (court appointed legal representative) will meet with your LO, check with Dr.s, family members, etc., and then register a report to the court as to the need for a Guardian. This is to prevent someone fom being unjustifiably declared incompetent.
There are court fees and the costs for the ad litem. In our case, we had to file Bankruptcy. Bankruptcy laws had recently changed, and that Court's Representative would not let our filing proceed without my having Gurdianship. My guess is that if you're going to need it, some issue will come up that lets you know.
Carosi, I'm interested in your comments about guardianship. I have committeeship (which is the equivalent in Canada) and find that I still have problems. For example, my stepdaughter who will not respect my posted visiting rights. There isn't a law passed that someone can't break if they want to. We count on each other being law-abiding, and yes, we finally have recourse to the courts, but it is a long, drawn-out and tedious process. The staff at the Care Facility are getting fed up with the situation - as I am - and my lawyer is good and taking action, but when someone is bound to make trouble, they are going to keep on doing it. I think that money is the underlying issue here, and I know that this is not unusual. I guess what I'm trying to say is that we have to do everything we can to protect our spouse, but we have to also realize that it's an ongoing battle and try to keep ourselves intact in the process.
Thank you for your information. I hope I won't have this problem. We are having the POA and DPOA and advance directives done now..takes our lawyer time as she has a small office but is one of the best so...And we will have our trust amendments since 2002 redone as the "lawyer" who did those was disbarred in 1999 and this was not disclosed. In the letter prior to this action against him he was a practicing lawyer..so I have no confidence in the trust changes and it will all be negated and redone. I would think that this along with the directions in the trust would put a cap on any family members attempt to undermine us/my orders and directions for DH care.
mary75-- I know what you're driving at and you're right. Guardianship doesn't effectively stop the person who wants to make waves. We are still having to decide what battles to fight, but it does put some teeth in decisions we make for our LOs care and safety. We certainly don't want to be the one to rock the boat of family relations by being too heavy handed, but our decisions must be repected and if they aren't we have to have a way to enforce them. It's a tough road to travel.
Carosi, thought I would update you on "putting teeth" into the decisions we make. The Care Facility Social Worker has backed me up with the stepdaughter respecting my visiting rights with my husband, and although the stepdaughter sent her a "pretty nasty email," it looks like it's been effective - for the time being, anyway. If not, I'll go the lawyer route. Thanks for your moral support.
mary75 i know its an ongoing battle with your stepkids ex. but geez you'd think if you have shown thru your attys that you are the one calling the visiting hrs for your spouse the facility would have to honor those instructions! and if anyone even someone other than a family person came they'd have to let them know visiting hrs arent available til.. such and such. and turn them out. my understanding is visitors need to sign in to visit an interned patient. i hope you can get this last ordeal ironed out effectively without alot of hoopla again. seems you will never have any peace. hugs. divvi
Yeah, Divvi, you're absolutely right. But when push comes to shove, the staff hasn't wanted to be bothered, or haven't done it, or are away from the sign-in desk. Their stock answer has been, "We don't want to have to deal with family problems." The Social Worker says she told the stepdaughter that I have the authority to set visiting times and make all decisions regarding my husband's care, and they, the facility, respect that and that she must, too. One of the complications is that my husband will phone me for help to head off the stepdaughter's visit, and then later on the phone, I've heard him talking to her, and he's making me out the heavy. It's always been this way; this is not just Alzheimer's. Double hugs back to you.
mary75---Typical kid behavior. Daughter doesn't want to go where invited--tells friend "Mom, won't let me." It's on Mom, even though Daughter told friend so on phone in front of Mom and Mom had nodded "Yes." and softly said if you want. Sounds like your DH doesn't want to deal with his Daughter, but also doesnt want to alienate her.
Layers. Layers and layers.
As to the facility. It would seem to me, by what the Social Worker said, backing you up, that the staff needs to be told that failure to enforce specified restrictions will result in problems for the facility and anyone not following through will be held culpable. Heaven forbid...but what happens if she is allowed an unauthorized visit and takes him out?
Carosi, I don't think there is much danger of that as she doesn't take him out. Her visits are usually about 15 mins. long, and she does not visit every week, although she will write on his calendar that she will come on Wednesdays. An example of her recent m.o. has been to write on the calendar her projected visit, "12 noon - 3:00 P.M. Wednesday, Sept. 22", then at 3:00 P.M. phone her father to tell him she's coming at 5:00 p.m. instead (which is the time I was there to help him with his dinner and bedtime care). In the best of worlds, the staff will back up the Social Worker. I hope so. They do respond quickly to call lights there, have good security guards, and the only problem I see is upset to my husband by the incident. If it comes to that, I'll ask the lawyer to step in.
Carosi, I let my guard down last weekend b/c we have a good couple of months. Thought it would be ok to take my DH with me and 2 of the grands to north Georgia to pick apples. Simply little trip huh? Turned into a nightmare and there I was with him having a melt down and 2 grands that were melting down at what their PAPA was doing!!! well, it took me two days to get him home and I said then NEVER NEVER AGAIN I do not care who begs or how good I think he is doing. The changes can make him snap in the blink of an eye. If your son insists, let him contact some of us or better yet print out some of our "experiences" for him. Praying for you I know that this puts you in a tough place with your family.
This thread is so important. I have posted in the past about my DH not being able to travel. Haven't seen my 92 yr old Mom, who is in a NH where my sister lives, over 700 mi. from me, in over two years! Last week DH asked how old she was and when I told him, he asked how her health was; I told him not good she is in the NH. He said, "Well, I think we should go see her!" I just said yes, I think so too. Two nights ago, got the call from my sister. Mom had had a heart attack, was in the hospital. DH wanted to go immediately. Told him we'd wait and see what happens. I (along with the doctors and my sisters) don't feel she will make it. And I do plan to go for her funeral. It will be the trip from hell - but I just hope DH keeps his upbeat attitude about "wanting to go"!
Oh Vickie, my heart goes out to you. My DH & i are going on a 500 mi trip this weekend to see his stepdad & brother. He has been asking about them & I figure that we better go now before the snow flies (we are going to Buffalo, NY) & who knows if he will even know them next year. We will stay with a friend. Hopefully he won't "sundown" there. I'll say a prayer for you that when you go on your trip it all works out OK.
BTW...I haven't told my DH that we are going cuz, of course, every half hour he would ask when are we leaving & we aren't leaving until Thursday, so I will tell him tomorrow night!
Vickie, just my opinion, but, if your mother is conscious and cognizant, isn't it more important to see her now before she dies. Yes, I know, socially, everyone expects you to be at the funeral but if you're not-----so what.
Lori, I have struggled with this decision. I said goodbye to her the last time I saw her and we had such a good visit. No, she doesn't know my sister or her husband, etc. She's really not cognizant of anything. Is on oxygen and morphine. It doesn't bother me what people think. I'd try to go to the funeral more for my sister who has been her advocate and caregiver for the past 15 years. But we shall see. Appreciate your input.
When it comes to travel, I weigh the pros and cons and his condition at the time. I try to keep travel to a minimum. Before DX it was a chore getting through airports due to the walking from diabetes..needed wheel chair or that cart to get to the gates which seem to be a mile apart. So unless there is some urgent reason for him to fly it ain't gonna happen. In Nov we shall see how well a 3 hour car trip one way goes...I think it will be ok unless it is too tiring..then there is Thanksgiving in LA to consider later..That trip I dread as there are so many. HIs family and friends are there but when there are 30 I think he will just be tired and go quiet. We have gone down and back the same day until the next day and the black friday traffic was terrible a 3 hour trip took 5
When my mother passed from a stroke I chose not to see her during the six days that she lingered. The last time that I had seen her she had given me a very long hug (unusual) and a kiss and she told me she loved me and I said the same to her. I felt that would be the goodbye that she would want me to remember, and I definitely wanted it to be the lasting picture of my mother that I could remember. I went to the funeral to celebrate her life that I was very lucky to share with her. Some family members judged me, but I handled it the way that I wanted to. I wasn't torn because I know my mother would have wanted me to do just what I did. When you live away from family you have to make hard choices.
Very well said, Joyce*. My Mom is still hanging on, but isn't eating, is on oxygen and morphine. They didn't think she would last the night, but did. I have things ready to go when I get the call. Hopefully, I can get DH in the car!
Have a safe trip when the time comes. I know your sister will appreciate your help and support more at that particular time. Having someone to talk about memories together really helps with the grief process for the family.
She has slipped into a semi-coma stage as of 3 a.m. Dr. said she is just slipping away. Then she can see my Dad (died 20 years ago) - they were soul-mates and had a wonderful marriage. She has always missed him. Just waiting for the call now. Thanks for all your support.
About travel: I took DH to visit daughter in TX. We usually come here twice a year. He knows the house, the kids, everything. Totally a bad idea. I had an inkling on the plane when he asked if the same daughter,M, would be picking us up. I said no, K. We are going to see k. Next day he thought we were going home.. Then, yesterday, he said to me, we live hear now, don't we. This is our house. This will be our last trip.
Mom passed away Friday night at 10:35. We left for FL around noon today and made it to Birmingham where we are staying the night. DH is very tired, but has done very, very well so far, although very confused. Keeps forgetting why we are going, who died, etc. But, so far, no major problems.
Bama, we passed by Culver on our way and I thought of you! Hope you have had a good day.
Thank you so much - all of you - for your thoughts. Mom was 92 and lived a good, full life. It was time.
Vicki, so sorry....my family always says....when you lose your mother you lose the last person that will ever give you unconditional love. You sound prepared and that is a blessing. Hope all goes well for you and your family.
Vickie, I hope you husband continues to do well for the rest of the trip and while you are at your sisters. So sorry for your loss and I pray you and yours will find peace in the days to come. Have a safe trip home.