This problem has been bugging me since I had to take my dh to the ER a couple of weeks ago. There is no denying that his condition has taken a downward turn. His neuro told me on Tuesday that he could keep going down or level off and be stable for awhile.
My dh has two sons both in their 30s one married and one not married. Both sons live in Illinois while we live in Calif. His oldest son is married and my dh has not seen him for at least 8 to 10 years and has only spoken to him on the phone 4 times or less. The youngest son he has not seen for 4 years and use to talk on the phone to him on a regular basis. The last time he talked to him was early Dec. 2011. No calls on Christmas and no calls on his birthday in early March from the youngest son. In Dec. 2011, I sent a long e-mail to the youngest son explaining his fathers condition and what could be expected in the next year or so and also directed him to go to the Alz's sites and read about the condition. That is when he stopped calling at all. My dh does not make phone calls and really can't carry on much of a conversation. So...he has not called them either.
My question: Now that my dh is in a decline and who knows what will happen sooner than later...do I alert, at less his youngest son of his decline? Do I just ignore him until I hear from him? Do I wait until my dh declines further? My children and I have a great relationship and this would never be a problem for me... my daughters are more interested in my dh then his sons are and of course, my daughters are concerned about my health and well being also.
Judith, you do what feels right to you. It's all about your feelings on what gives you piece of mind.....you should do whats in your heart. You can't control what anybody else does. What you can control is what gives you peace of heart and mind. So what ever your decision ....it's not wrong ....it's the right choice.
Thanks Terry...but, that is kind of my problem, one day I think I should notify his younger son and then I think again...no way will I do that he hasn't even made an effort to contact his dad in almost 6 months.
My dh never mentions either sons. So I might be opening a can of worms that I just don't need right now.
Oh Judith, don't torment yourself. It's what's right for you, not anyone else. You kind of answered your own question: So I might be opening a can of worms that I just don't need right now. If you don't need it that's all that matters. You need your strength for you and your hubby......take care of you. Remember you can't control others (his sons).
Right Terry, think you have hit the nail on the head. If his sons don't understand by this time that they need to keep in touch then that is their problem and if my dh never mentions them, then I think I will just be concerned about him and me and that is all I can handle right now.
If you know in advance (in our situation, my husband had "an event" and the Hospice nurse told me he had 3-10 days left) at that time I would contact each of them to give them the opportunity to come and say goodbye before he passed if they so wished. You have no obligation to have them stay with you - they can check into a hotel/motel if they come. You never really know how they are going to react. They may not even respond to you, or they may thank you and come. Of course your husband won't know them (and that is the excuse a lot of kids give for not calling or coming - plus "I want to remember him the way he used to be"). The same for the funeral - advise them when it is, and let them make their own arrangements. You are under no financial obligations to them.
For now, you are right - "I will just be concerned about him and me and that is all I can handle right now."
Hi JudithKB, the first thought that popped in to my head when I read this, is , not now.
Just a suggestion, maybe, you could write a short summary of what is going on, and send one copy to each of his boys. (When you are ready) Obviously they don't seem to respect you, or their Dad, (imo), and this way you don't have to talk to them. Seems to me they would prefer it that way too.
Unreal. I keep thinking of the thread here, "There are still some good people in this world" , and I cling to it. His sisters just an island away, have not called in months. When they do they just express their disdain to me that "he does not talk long to us", like I put him up to it. Sounds like your situation.
Others just don't understand Coco...they don't "get it". Our spouses seem to be in a kind of mode, when relatives do call they give it their all and almost sound normal for 5 to 10 mins. on the phone when in fact we know that is not true.
I'm really just totally stressed out right now...I need to pull myself together.
Was in the same situation and know the dilemma. I ditto Mary*'s remarks with the emphasis on not feeling obligated to them in any way except to give them the information.
JudithKB, of course you know we understand about the "falling apart" times with this disease. I have been in a lull for 2 weeks and milking it for what it is worth. I fear the next one.
SO,TAKE CARE OF YOURSELF!!! Can you get out for a walk, go back to that church for more prayer, drink lots of water and make sure to take vitamins. I so hope you feel better soon, as I know, we know, how awful it is for you.
I wouldn't trouble myself too much over this uncaring group. Given the lack of phone contact over the years there is no reason for you to initiate it at this late date. The counter point being, you don't want to doubt yourself. Better not to have any woulda, coulda, shoulda's ocuppying prescious mind space.
I'd place the burden on them via an Email with an update and ask if they would like to be kept up to date. Their reply will tell the tale. If you don't have their Email addresses then write "snail mail" and tell them that you'd like to keep them up to date as to their father's declining status and request that they provide you with an Email address. Once again their reply will tell the tale. The bottom line is you tried to do the right thing.
Well-since you asked: I would send them all either an e-mail or snail mail (keeping a copy) sharing what the neuro just told you. They deserve to know and how they respond/or don't-is up to them. That way they can't claim they didn't know what was going on.
I think the above advice is quite good. I do recommend writing via snail mail. E-mail is easily lost and blocked by virus blockers. And regular mail is somewhat special.
Don't go into much detail. And here is something that might not be often put into a letter at this time, ask them how they are doing and that you would like to here from them. You can mention the phone difficulties but that if they can't come that a call would be OK, that they could send photos, or that you can relay any message. Who knows, they might have something they would like to tell you and not their dad.
The distance of time can create a feeling of embarrassment, so give them an opportunity to open up. If they don't return your letter or show interest, that's that and you know that you tried your best. But I think letting them know you would like to hear from them (as opposed to just "this might be your last chance to see your dad") might have better results.
I agree about sending them a letter about the latest and leave the rest to them. that way you do not have to be concerned with them coming back later claiming you never let them know.
Our son doesn't call his dad because, according to him, he is afraid I will answer. He is angry at me for telling it like it is - he is a deadbeat dad - and not giving him money so he could keep his truck (money we gave to his wife and kids after he walked out which was only $300). Daughter thinks I am the most evil person in the world and dh would not be this way if it weren't for me. My demeaning, demanding, authoritative, self righteous ways have driven him to this. She is really screwed up so this does not surprise me. I will let them know when there is a change they need to know and that will be it. But then again she always points our I am not her 'real' mother (adoption) so she doesn't have to be nice to me.
Judith, do whatever it is you need so you have no regrets later. If not communicating his condition with them will not leave you feeling any regrets, then do not. You know yourself better than we do.
JudithKB, first of all I am so sorry that the decline is coming so quickly, we all love you and respect any decision you might make. We are your number one cheerleaders.
My DH also has grown children (they were grown when we married) that show no desire to help with their dad and when I try to explain things to them they brush me off. But I have done alot of thinking about would I or would I not notify them of an rapid decline or would I just let them read the obit in the paper? My selfish side says that I would just let them read the obit and if they show up for the military service so be it. However, lately I have done some spiritual reflection and have decided (at least for now) I would put myself in my DH's shoes. IF the tables were turned, and it was me that was in a rapid decline, would I want him to notify my children? YES YES YES I would, soooo I am now of the mindset that it would be best to let them know (either email, snail-mail or a quick phone call ever if you have to leave the information of the maching) at least they have been told and have the option to make their own decision.
Once again I fully support you in any decision that you make. Lots of hugs
Thank you all so much. His decline is not what I would call severe not like I need to contact hospice or anything like that. But then what do I know about the future ...but, it is a definite decline and a greater decline then he has ever had within a week or two. All other changes were just small things on a continual basis until they became worse and worse. This decline is like one big drop. There is no doubt in my mind from everything I have learned on here and read he is now in stage 6. Tuesday night, he went to bed at 10:00 our usual time....I finally had to wake him up Wed. afternoon at 3:00. Who knows how much longer he could sleep? He doesn't seem to understand much of anything I am saying. If I say..."put that over there by the pillow"...he just stares at me. Just last week he was able to get the ice for our drinks at dinner and small things like that...now he just stares at the glasses until I open the refer and point to the ice. He is just out of it.
i would send emails to them all but only after something major has occured. sorry i am of the thinking if they cant pick up the phone or call about their dad then they deserve no concessions. hard hearted hannah! ha. divvi
Your dh and mine seem to be in similar states. I have wanted to ask here before, but don't think I ever did, "what does so much sleeping mean?" Before his transport last week I was counting about 18-20 hours of sleeping on a daily basis. But for him it was not such a block of time, at least not recently. Maybe since the first of the year there were a few months of that solid sleeping. The week or so before hospitalization it changed to a very fragmented sleep. He has never been staged but I would also suspect stage 6.
Having no children, I am currently deciding what to tell his parents and siblings. For me it is a fine line between ethical obligation and protecting both H and me from what may be their reactions. I've asked myself- does it have to be done today? So far my answer is no.
abby that is lovely...does it have to be done today...and your answer is no. Best wishes to you both to get some rest before making any major decisions, or even small ones.
Dado would stay in bed all day with the silent tv, if not for the pacing and false bathroom moves. I have been FORCING him to go outside and walk around the yard just to stretch out, this , for a guy that no one could keep from working sunup to sundown, not that long ago.
Judith, do what your heart/conscience tells you is right. I am a hard hearted hannah-DH's brithers, nieces, nephews (we have no kids) don't call, didn't respond to my emails regarding his condition, and quite frankly have "disowned" him in my mind. So, I've decided that I will not notify any of his family when he is near the end or has died. I am not willing to allow them to assuage their guilt by attending a funeral. They will read about his passing in his obituary.
I think you could say, I am a hard hearted Hannah also. Think this maybe why I was having a problem on what I should do because my decisions are taking the hard hearted Hannah approach and in this case it might not be the right thing to do. Well...I am not going to do anything. I will wait until he gets worse and then I will reconsider. I just don't need the additional stress. Thanks to everyone for helping me come to this decision.
Your DH's sons are self absorbed, it sounds like to me..to be so distant from their father..I don't buy into this notion that " the kids just can't handle it" and are " grieving in their own way, the loss of the father".. For them not to call you, to be supportive in anyway is shameful. Thank heaven for your kids...who are there for you and for your Do what you feel is the right thing to do...it has to be. If I had such disinterested non supportive step kids, kids who are now adults who behave this way, it would not bother me in the least to advise them when all is said and done and have only those about me who not only were and are supportive of me but supportive of my DH as well. On the other hand, you can be sure, when your DH is gone, those boys will be around and will make trouble for you. So there are things to consider. I suppose, in the last analysis, I might be of a mind to send a brief email to both of them only when there is a significant decline..but do not expect a call or note or anything.. They will either come to see their dad or they won't..and if they don't.....Do what you have to do to protect yourself and your husband from these two.
Something else to think about.....After consulting with a lawyer yesterday and having him review all our wills, POA, and now a representation agreement. One of the things he said to me was to get a note from his doctor to say he is, at this date, competent to sign his legal documents and when the doctor considers he isn't competent to have him write another note stating that.
Why I'm writting this is, what if, his sons decide they should try for POA or something else while his is at this stage. This lawyer was telling me and I also have read here some horror stories about children and what they will do when there is money involved. For me having step children that haven't contacted for over 15 years, I am not and will not be sending them any info at anytime.
So maybe no news is the best way to go. It is important to look after yourself and you don't need any additional strain, your plate is full.
What you say, Amber, is so important not only to protect yourself from the threat of the kids, as your seem to be, and for that matter who knows how people might behave, but also in case you are making decisions about your own personal business issues. This will protect you and your DH from anyone trying to cause trouble later by saying he was not competent when in fact at a given point in time he may well be.. Thanks for sharing that important bit if advice.
We faced that issue when we were reviewing and changing some things in our trust..our elder care attorney was very specific in her questions etc to ensure this was the case, that my DH could in fact make his own decisions and clearly understood the concepts...even if he had to have the conversation reviewed he would say yes I recall that now and I agree or disagree....We could not do this now as his understanding of the more complex issues requires far more explaination 18 months later than when we finished our work.
Amber we had and Elder Attorney prepare our wills, trusts, etc. a couple of years ago. At that time my dh could understand what was going on...now he wouldn't be able to understand at all. The attorney, kept lots of notes when my dh was responding to her questions. I think it was so she would have them available if his children ever objected to the wills we have. He didn't want to leave his two sons anything...but, and I disagreed with him and thought he should leave them something. The attorney also said he should leave them something and he finally agreed.
The best part of the trusts she did that I liked...no one gets anything until we both are dead. And, if he dies first since we live in a community property state everything he has would go to me. But, if I die first, there is a trust for my one-half of community property and his property to go into a trust for his care until he dies...there can be no distriubtion of property until we both are dead...with his sons only getting a token amount. Therefore, if the sons try to make a move on getting something when I die...they can't as long as their father (my dh) is alive...because everything will be tied up for his care.
Getting the legal things done early on has been a blessing. It is just one less thing I have to be concerned about as things continue to get worse. Ca. is such a strange place for legal matters and one never knows what a judge may do or not do unless things are really done right by an attorney. Also, I think in Ca. getting an attorney that knows what they are doing is a must.
We have a trust set up and I am in the process of moving things into it. Very slow process. Very frustrating.
The one big thing I wanted to protect, I learned I cannot protect: his IRA. Apparently retirement accounts cannot go into a trust.
If I die first, I worry that the IRA will be raided by his manipulative daughter.
I really thought the solution to my worries was a trust, but now I am thinking it was a lot of money spent for very little security.
If he dies first, then things will be protected somewhat.
Long ago he asked an attorney if he could put a clause in our will saying if anyone contested it, she would be disinherited. The attorney said that is not allowed in this state.
Judith, you have done what you can. I am in the same situation, except Lloyd's 3 kids are close by. I am done catering to them and begging them to spend time while they can. My kids are here. My plate is full. If they do not care about their dad, I do not care about them. You take care of YOU!! I would inform them of nothing. If anything were to happen, I am sure there are mutual acquaintances who would be more than happy to deliver the news. If not, tough luck. Legally, everything goes to my youngest daughter who gave up her home and her life to come back home so I could quit work and be home to take care of him. I have my POA and he has his DNR so they can't step in at the last minute and stop him from leaving this existence just because they feel guilty. Quite frankly, screw 'em.
Amber, I'm glad you were able to find a good lawyer. Just an added note of precaution (learned from sad experience): where you can, put all the money where the step-kids can't get at it. (See my previous postings.) For example, have a joint bank account which requires BOTH your signatures and keep that topped up to pay bills. Keep minimum in other accounts that are in his name only. Keep all records for as far back as you can. The Trustee Company who is handling DH's estate is asking for pre-2000 cheques and basing major decisions on that. I can't supply them as DH was not tracking well as far back at 1997, and his files are practically non-existent. His bank accounts were closed by his children in 2008 - in spite of my POA - and new accounts opened, so I can't get records that way. You almost have to put your mind in their mindset to anticipate possible moves on their part. It feels at the time like paranoia, but, unfortunately, that's the way you have to think to protect yourself. "The love of money" etc. etc.
Ms. magic, we closed out our IRA's (over a period of several years for tax reasons), put the money in a money market fund which we were then able to put into our trust.
In order to protect our funds in the event I die first, our attorney set up a Trust in my name only and that trust is a trust for the care of my dh. The attorney stressed over and over to me that it was important to put all except the what is needed to pay monthly bills etc. in that trust because it spells out that the money is for his care. Also, as I explained earlier there can be no distribution of funds in that trust as well as other trust until we both are dead.
You might want to ask your attorney if you can put in your wills that no money can be distributed until you both die. I could die first and my kids cannot get anything until Jim dies but, most important Jim's kids can't get anything until we both are dead. Also, if you have power of attorney you could get that money from your dh's accounts and put it in another account in your name only.... but, I still think the best protection is the will stating no body gets anything until you both die. That should cover the IRA. If you put the money that is in his Ira into an annunity sometimes you can have the account belong to both of you. There might be a penalty, but it might be worth it. Of course, alot of these provisions are different depending on the state you live in. If it is a community property state like Ca... it doesn't matter that it is in just one name....one half of it is yours anyway. Very difficult in Ca. to have something remain as "sole property" of one spouse or the other.
I am the beneficiary on everything ... his insurance, his IRA, etc. Not sure I want to move funds out of the IRA yet, but it is a conversation I should have with my lawyer.
We have a pour-over will, which says everything goes into the trust. Since the will is a public doc, but the trust is not, then stepdaughter will not see it. Nothing goes to anyone until after we are both gone -- accept some of my accounts (in my name only) go to my daughters.
Actually, my lawyer said that if I die first, DH should not tell his daughter. Since we have little to do with her, that would be easy! Lawyer said wait a few months, get everything in order [my daughters would do that] and then let his daughter know when things are in place.
Just another thought...what if your dh or anyones dh was still at home. Who would take care of them? I don't think any place would admit them without permission from next of kin. I don't know what happens then. I have no one that could take care of my dh. Maybe they could get his dr. to have him admitted to a nursing home. But, they would probably notify his next of kin...
My bachelor uncle never had any legal papers drawn up so when he became very ill at age 85 and had to be placed, I had to go to an attorney and go through the courts to be named guardian ad litem. Within two weeks he died (without a will). Back to court to be named personal representative. Fortunately he had enough money to cover the legal expenses.
I told my husband he would have to go to assisted living if I was hit by a bus. He tried to argue but I pointed out the things he needs help with and he seemed to see. I need to face doing that will--the lawyer wanted to set it up to avoid probate and that makes it more complicated in ways I want to avoid.