I'm due for surgery in Sept. My DO's out of state family has offered to have him vacation with them for a while. Sounds great, right? My husband had a traumatic brain injury years ago, so we have all dealt with his minor memory loss over the years. Since his AD dx, his family has been unable/unwilling to acknowledge a new problem exists and credits his information (over the phone) as gospel. They visit annually and I send them all relevant articles. Recently my DO experienced a horrible reaction to his license being taken away, much like Joan's catastrophic experience. Two weeks ago he took my car key and hid it, along with his social security card, intending to find his way to Motor Vehicle and get "relicensed". I discovered this when I needed to use the car. It was necessary to get the keys reprogrammed, so the one he hid would not be useful. Meanwhile.....he needed to have an official ID card from the motor vehicle dept. for his airline flight. I was not going to be the one to take him because of the possibilities of a scene when he demanded to be relicensed. My son offered, my husband was informed, and the phone call from his family came. ( to DO on his cell phone) Then,that same day, my children and I were copied to an email sent to my DO from my in laws, which cited the importance of the ID card. It further included the address, directions and phone number of our local DMV.They live 3,000 miles away and we have lived here all our adult lives. Obviously my spouse informed them that we were not responding to his need for an ID card, when in fact he was positioning himself for a new license. My children are all intelligent, married adults. All of us are insulted by this seemingly sarcastic email and I don't want it to be the "elephant in the room" when they come to visit. I feel I need to respond. They were already aware that he has no license. I emailed the news of the stolen car keys prior to the telephone call. They never sent a response. I am very anxious and depressed to find myself in a position of no credibility, when my husband depends on me for his care. I know there's no magic solution, but I can't not respond to this email. Most of us have had our spouse rant, scream and intimidate us and walk into another room and be calm and reasonable. His family won't know he's lying.There will be no anger during a vacation and no challenges that he has to respond to. I want to disappear.....I feel totally impotent. I HATE THIS DISEASE.
Dear Jean, I have been, and continue to be, in the same nightmare with my husband's family and his disease. It seems that you can't win. All you can do is stand fast, seek out positive people, and you will come through at the end, knowing that you did your best. But I'm sorry you have to go through this - it's bad enough dealing with the dementia without all the other garbage. I'm sending you my fervent prayers. Mary
jean, send him to them. Let them have him for the days or weeks that you need to recover. Have your son be the contact person for when the s@#%^#@ hits the fan, not you. Talk to your son and find out what he thinks since he WILL be dealing with their hysteria when reality hits.
I know it sounds cruel all around, but you either take them up on their offer, or you place him temporarily. When I thought I was going to need surgery I was told that you contact the social worker at the hospital where you will have the surgery and explain the situation. Pretty obviously YOU can't go home to an empty house without making plans for you, so you also might need to go to a rehab hospital after surgery, or it might be that what you need is visiting nurses and meals on wheels. The social worker ought to know. While she is taking care of YOU, she can also take care of HIM.
Jean I have to say I like starling's responce, take them up on their offer. Sometimes the only way for some people to get it, is to be hit in the head by a 2X4! If you feel he would be safe with them, let him go. I can relate to your frustration, it is hard during that time before it is crystal clear to everyone something is wrong. I too remember the phone calls from 3000 miles away, everyone sayin, Oh I don't see anything wrong, he seems fine to me. Now those days are long gone, a stranger can tell he has AD.
It is very frustrating and I am sorry you are going through this, on top of your already burden shoulders. Best of luck! Nikki
Just yesterday I was talking to my neighbor. To quote: I was talking to your husband the day before your had him admitted and he seemed fine. I have given up responding. I am finally comfortable not having to explain my actions to those who don't have to bear the brunt.
It is strange how some family members get it & others don't. My sons both get it now, however, I still have a daughter-in-law that still doesn't think my husband is that bad. My other daughter-in-law finally ask her "What room she was in" when my husband cannot complete a sentence. They only sentence he completes is the one that we have figured out what he is trying to say. On Father's Day, my father-in-law ask him if he had signed his card, NO the man has not been able to write his name for 2 years now. I guess they see what they want to see only.
Bless you all. I sent my email to them, as did one of my daughters. This was a tough day made all the more difficult by intelligent people with no compassion or common sense. So many of us experiencing the same sad things! Thanks for your support. This group gets me through the saddest days.
I am so sorry you are going through this, but kudos to you for standing up for yourself! I hope it helped relieve some of the anger their calous reply must have caused you. Thinking of you, Nikki
"tough day made all the more difficult by intelligent people with no compassion or common sense"
Well said.I think as caregivers we face lots of days made far worst because of the thoughtless ness of supposedly caring people. I'm not trying to sugar coat this , but I 'm not really sure that anyone who doesn't live this life can understand it. When we first got our diagnosis , I didn't know squat about AD and for several months I got my information from the AA web site. Good information, yes. but so much of it didn't apply . So often about caring for an elderly relative. The feeling between a parent and child are so different. Only once in awhile did a spouse post.
When I found this site I also found soul mates. People who were watching day by day the very disintegration of the person they fell in love with. It may not be possible for people to understand... but still
Just this week my ex-sister-in-law asked me how I was going to feel when my husband no longer recognized me! Well, DUH, isn't that a thoughtful question?
Jean, You need to do what you need to do for yourself to get ready for surgery. Take care of yourself, mentally and physically. We're thinking of you.
I just want to add my 'amen' to this. Its so disappointing to NEED support from our spouse's family and either because they can't grasp the enormity of this kind of disease OR whatever. If family members only see our spouses once or twice a year, if that, AND they sound 'perfectly fine' on the phone (no matter if none of it is true).. an extended visit, should clear up everything in a hurry.
If there is some way to make sure they know that THEY are legally responsible if he drives while in their care (whether thats legally true or not), it might cause them to think twice about slipping him the keys so he can feel 'free' again. Not sure that issue would crop up but your son could possibly tell them.. At least they would have been told.
Again I'm reminded of 'the plan' that we all need for alternative care if we can't do it. It stays on the 'backburner' till something urgent comes up.
Will be thinking about you and hoping things work out better than you expect. His family WILL recognize the problem AND you will have the time you need to recover. Sounds like a win/win.
Woke up this morning to find more of you responding to a friend you never met. i'm overwhelmed....and grateful. My children and I have a plan in place to discuss their concerns with DO's sister and BIL. Neither my husband nor I will be present. My husband is, as many of our spouses are, angry with me, the caregiver, the "free one". His accounts to all who will listen, are of a cruel wife who's not concerned with his needs or happiness. If, as in this case, the wife is not given any credibility ,"his truth" is very damning. I think that's where I am with my "other family'. DO and I sat together at church this morning, and the hymns and readings kept the tears leaking, until I finally was able to leave. I prayed that we would all find solace spiritually and through the comfort of one another's true understanding. God Bless you all.
I remember well the days when Lynn's family insisted there was nothing wrong with him, or the comments such as we have all heard that -- oh he seems fine to me? It is all to clear now a days, and that particular aspect of AD is behind me. But, it obviously still has the power to upset me, as I am sitting here fuming as it all comes back. I think we all go through this stage, but not to the degree you are. I never had a family member go behind my back and encourage something dangerous, like driving. Your feelings are justified - I am glad your children are coming to your aid. Thinking of you, Nikki
I'm dealing with my inlaws over the driving thing too. Last Aug.-Sept. while I was getting my medical situation up to date, a couple of his Sisters brought a motorized scooter to my hubby, while I was at an appointment, and reinforced to him to keep it secret. (So great to undermine the trust we need for him to be able to be at home). They'd been told he couldn't have it, but they decided otrherwise. I made a big issue of getting it gone from hjere ASAP--for which I caught a whole lold of crap for not getting him care "when the Strokes happened". We met and married in '74. In '76 a family Dr. noticed his "familial tremor" in his hands--very small. In 2006, the neuropsych testing ID'd the Strokje scars, one of which is in the area which would produce the tremor. After, the one sister returned home to NJ, I knocked myself out researching further regarding use of the scooter (road worth) and arranging for him to attempt to become relicensed--Secretary of State's Office requires to be relicensed after major medical issues whoich have or may affect driving. The upshot was, he failed testing, therefore no license. A license is required for operating a road worthy motorized conveyance--no scooter. In my letter to his sisters, I informed them of these things. I also, after getting my head straight on what my job as Guardian is and is not,told them this was the first and last time I was goling to this extent to provide documentation and sources to support my decisions on his care. If they cannot accept my decisions for his care as his wife and caregiver, they will have to accept them from me as his Legal Guardian. I did not get into what kinds of things can/will happen if they ignore or interfer with things again, but I have finally got my head straight that, my job is his care, not making things better/easier for them. Any consequences arising from their interference or violation of my decisions, is on them--not my doing or fault.
This kind of junk is nearly worse than the VaD. He doesn't present problems knowingly. My family doesn't get it completely, but they help. His family doesn't even call and the one in NJ is the only one not local. One is about a 1/2 hr. away, and the rest live right here in town.
If you're comfortable that he'll be safe--let them get a taste of the reality of him, whilke you get yourself better. Who knows, it might open upo a whole new aqrea of support, or at least of clearer understanding--maybe?
Jean, reading all of this & the heartaches you are experiencing (and others too!) makes me glad that my DH doesn't really talk much at all to his family anymore & when he does, he isn't critical of me. I will count my blessings this day & continue to pray for ALL of you who are dealing with scarstic extended family. The one sister-in-law I do have was scarstic and critical and it's been 2 years since I've had to deal with her -- I am thankful! Jean, I am glad that you are able to go to church still & even though you had tears, perhaps the words of the hymns will be a comfort to you in the days ahead. God does see & hear all ~ Sometimes it may not seem like it, but keep looking up! He loves you & wants His best for you!!
Oh my what a problem. I use to feel sorry for myself because I am the only caregiver or family living here that can help him. Now...I think that is a blessing.
I agree, JudithKB. We moved to Florida and my DH 2 sons are in NY. But they completely ignored him the last 2 years we were up north and have hardly even called him since we moved down here a year ago. I feel badly that I'm the only one to take care of my husband, but when I read these stories, it might be for the best. I have emailed them with updates and don't even get an email back. I keep saying to myself that they will be sorry some day and it will be too late! But at least I don't have to worry about anyone questioning my decisions or underminding my care!
I'd cut out sending the emails & let them ask. Why bother? You've tried to reach out to them & no response. Whether or not they will be sorry is up to them. Sorry to be so blunt, but why waste your precious energy? It must be hurtful not to get a response, so I figure you are just causing yourself pain, and you don't need additional pain.
Flgirl, i went thru this lately trying to send updates on DH to his 3 kids here in the SAME city as he was having some new health issues-. i thought, now why do I HAVE to be the one to relay his health info? if they want to know how hes doing they can call, uh-let me think,?no-thats too complicated, send an unpersonal email like, 'how's dad? every blue moon or at xmas or birthdays-" even when i did take the time to send it out, letting them know he was in the ER for such and such, etc they never sent a reply about a followup. soo guess what?? no more notes on this end. you cant MAKE someone care you know. divvi
I invited my son and DIL to spend a week with DH and then a week of my month on the island. IT WORKED LIKE A CHARM. Now they understand what we're dealing with here, and I don't think they did, before.
My My again. My DH just told his son in Illinois 2 weeks ago after we went to the new neuro and haven't heard a word from him. I had been begging him to tell his son for months. It just makes me so mad that he would do his father that way but I say nothing. We even told him that if he wanted to come to Calif. to visit his dad we would foot the bill. Not even a damn phone call to see how his Dad is doing.
I use to have what I felt was justifiable anger towards Lynn’s children. I use to think, if he dies, don’t you damn well DARE come and cry on his grave. If you couldn’t care enough to visit when he was alive, don’t bother even coming to his service…. I was very very VERY angry back then.
Part of it was because I wanted them to visit, but now I think I needed an outlet for all the anger and injustice I felt for losing Lynn to this horrible disease. It was easier to express my anger about them. If that makes any sense to you?
I KNOW Lynn’s children love their dad… with all their hearts! I know they care, and will grieve just as deeply, if differently, than I . I use to visit my dad every single week, sometime 2 and 3 times a week. But my siblings didn’t. It didn’t mean they loved him less!! It meant that I was disabled, therefore wasn’t able to work … so I had the time they didn’t. They had to work, they had their own families to raise, in short, they were busy living their own lives. What every parent wants for their child really…
I still do get upset sometimes, but I have come to learn that it isn’t that they don’t care. I do still feel alone in his care, and I wish they would offer to give me a break every now and again, but I do know they love their dad. The boys live closer and are now starting to help me with things that Lynn or my dad use to. Like yesterday we had a tree across the driveway and we couldn’t get out. I called and they got here as fast as they could. They may still not visit often, but I wonder how much of that is because it hurts them to see their super hero falling? No excuse, but I do feel bad for them.
Lynn is getting worse, and it is evident to everyone….. They do call more often and one of his sons is a huge help of late. I know if I truly need them, they will be right there. I am NOT excusing bad behavior or lack of concern for anyone else’s children!! I am just sharing what happened in my own family. Again this is why I LOVE this forum so much, the love of a child is so different than that of a spouse.
Thanks for the feedback. I know that part of the reason DH's sons are not in contact is that they can't stand to think how far he's fallen. And since DH's brother died of AD at the age of 71, I'm sure they figure their chances of getting it are better than average. I guess everyone has their own way of dealing with this rotten disease.
FLgirl, you know I have read probably hundreds of times about the fear of heredity factor, But until I saw your post -it never dawned on me that could be a concern of theirs as well! I would think it would play into it wouldn’t it. So hard for everyone involved.
Nikki, we know that my DH has the 4-4 gene so they at least have one 4. So they are right to be concerned. I know that one son has told me he can't deal with it. At least he was honest with me. The other one just buries his head!
FLgirl, Well, just let them be. Like us, looking into our spouse's future, they are probably looking into their own. It is not a pretty picture, and surely one you would want to avoid looking at. Hopefully, there will be a cure before they may have to face it. I imagine emails that perhaps foresee your own future are quite devastating. The updates are probably depressing. Unless they ask, forget it. Everyone has their own ways of coping.
I agree, Val. I don't send "updates" to my husb's kids for that very reason -- too depressing. And they rarely call -- maybe once a month. I know it's hard for them -- they've said so. Their dad was always the "unconditional love dad" -- Each of our kids "hung the moon" as far as he was concerned. Even my own family, altho involved & talk w/me weekly or more often, they were SHOCKED when I sent an "update" letter recently after I just got PO'd one day because my own mom acted with what I call "no empathy" for me...I guess until people actually walk in these shoes 24x7 for a couple of days, it's hard to know what our LO is experiencing, or what WE are experiencing. Rarely when someone says "how is DH doing or How are you doing" do I just "spill" -- I do have a few to do that with & they just cry along with me. But when you put in writing just "how things are going", i.e. DH can't hold his own pee pee any longer; DH cannot find the car door to get in; DH cannot slip on sandles without getting feet mixed up...and on & on, WHOA, people begin to "see" and say "i had no idea"...but then again, who wants to bring others down in the dumps with us?? Like i said, I have a few who I can cry & spill with & then go on with life...And it helps ALOT to be on this website & see what others deal with & find that I am in no way "alone" in this disease...I am thankful for ALL of y'all!!
My sons were very articulate. They are scared to death they are going to get this. Their dad has it. DH's father, 2 uncles and 3 cousin had it as well. Hopefully, there will be a cure or perhaps a preventative before long. I don't offer any information regarding their dad's condition. If they ask, I tell them. Now, my daughter is different. She asks. calls often. A true gem if there ever was one.
My husband's brother never called at all. He didn't even attend the funeral. My husband did everything and after all the bills were paid, he sent his brother exactly 50% of what was left. He didn't even send a thank you note.
Some people are just frightened and you know, I can't blame them. I really feel sorry for them. When my parents and parents in law were alive, we visited them at least once a week and sometimes more.