I’m turning my life upside down for my 86 year old husband who has late stage 5 dementia. I am only 65 which makes things a little different from other married couples . We have had an extraordinary 20 years of marriage . I have been his sole caregiver for 3 years now . The last 2 years have been particularly stressful . I have finally decided to put him in respite care at a facility in his hometown where HE wants to be living ( not me .. but I will move for him ) and I am going to take a week off to go visit my friends in Florida . My husband knows all my friends in Florida because they were his friends too. My girlfriends happen to be single through divorce or death of spouse . My husband doesn’t want me to go and leave him for a week even though I will have his friends come and visit him in the facility while I’m gone . He has cousins and friends in our hometown and he even has friends in the independent living section of the facility . He is having a breakdown and says he cannot go there alone . He would rather die than for me to leave him , he can’t do this , he doesn’t want to go there and he doesn’t want his caregiver staying at the house with him for a week . He has called his brother , a non practicing attorney who is a lobbyist in Washington , DC and has asked him to get the POA changed and re do his will . Unfortunately my husband is a very controlling , paranoid man … probably because he had a speckled past in his previous marriage . I’ve only been allowed to go on one girls trip in our 20 years of marriage because he didn’t want for me to leave him . He has been agonizing over this for days . My trip is in 5 days . He doesn’t want me to go . He is scared and anxious alone . I’m the only one he wants to be around . He has very unhealthy attachment issues .
I feel guilty for leaving him for a week . His kids are fine with it … but his brother is doing everything to undermine me and has the contacts and resources to make my life difficult . He has always been suspicious of our age difference … yet we have had a magical loving 20 years together . It is a little harder with the age difference at this stage in our marriage . I’ve been his sole caregiver and I’m worn out . I am willing to do most anything for my husband “ except” giving up what’s left in my life . I’m probably on the verge of a mental breakdown because I’m so trapped and feel so guilty . And I hate feeling this guilt from him and hate his brother for continuing meddling in our business . I’ve tried to open up lines of communication with his brother but he will only talk to his brother who is demented . BTW… he has had the most horrible and dysfunctional marriage of any couple I know . It’s all about “ control” in those Washington , DC circles .
so the question is “ should I cancel my week trip to avoid feeling so guilty for leaving him ?”
I’ve never had children , so I really don’t have experience is how to handle childlike behavior and especially demented behavior .
Did you CAUSE the dementia?
No.
Can you FIX the dementia and choose not to?
No.
So where is the word "guilt" which requires CAUSATION, coming from.
You are experiencing grief, not guilt.
And exhaustion.
Answer is that you should make your trip. He can meltdown.
Since WHEN was his life all about he has to be happy all the time and you are responsible to make it so?
You are taking on responsibility for dementia, for happiness, and for a whole bunch of stuff that isn't yours to own. Don't do that. Your dance card is already too full to be able to afford that sort of wrong thinking.
How do you HANDLE it?
You say "Sorry, honey, but I am already overwhelmed in your care. If you expect me to continue it then I will need breaks, and this is one of them. "
Period. End of sentence.
I wish you a happy trip.
I'm just joking around because I'm bored to tears in the office today.
You're right no one can be responsible for making another person happy all the time.
Amen!
You should go on your trip. Don't tell people who work against you any information... they are on a need-to-know basis if they can't respect you and your decisions. Ghost them. But make sure your PoA is iron-clad because I'd be worried about his kooky brother visiting him in the facility and getting him all upset. FYI it is not a good idea for him to have a lot of visitors at first. Is he going into AL or MC?
If you haven't visited YouTube to find Teepa Snow videos on strategies helpful to caregivers of LOs with dementis, you really need to. I found them incredibly useful.
Think of your feels of guilt as grief. You aren't guilty of anything, therefore please stop yourself from thinking this.
He went into home hospice on July 25, agreeing that there would be overnight agency aides so my mom could sleep. He went hysterical at these aides. We were in the process of moving him to another hospice with a home attached when he died. Another 10 or 15 days, he would have been there.
Go on your week long respite and seriously consider placing your husband in this facility permanently. Marriage is supposed to be a team effort, not a selfish pursuit of HIS wishes, with or w/o dementia. You matter too, much more than you realize.
His brother, the non practicing attorney in the swamp, should know, if nothing else, that wills and POAs cannot be changed by a demented elder. Even by retired former attorneys on power trips.
Have fun!
Forgive me if I speak plainly, but that's bullsh*t. You're 65 years old. You came of age in the 1970's so there's no "allowing" or permission required from a husband, father, or brother for an American woman your age to do anything.
You CHOSE not to go on any girls' trips.
You say here that your husband has stage 5 dementia. So he's not calling the shots anymore and making the decisions.
You put him in whatever facility you're planning to use for his respite stay and take your one week in Florida. In fact, take two weeks. Why shouldn't you? You'll still have the miserable drudgery of caregiving the other 50 weeks in the year. Let him throw as many tantrums about it as he wants. Let he brother, his kids, and the respite facility deal with his tantrums and hysterics. You go to Florida.
Let me tell you something. I was a homecare worker for 25 years and have seen every family dynamic there is. I have seen many people with dementia flip out and throw constant tantrums if one person isn't by them every second. I've known caregivers in such a position die before their demented care recipients.
What happens if (God forbid) the stress of your husband 24/7 with no break gives you a heart attack and you die? I'll tell you what happens. His brother and kids drop him off at a memory care facility and they walk away.
So put your leaving for some respite in these terms. Is your husband spending one week in a care facility without you better than spending the rest of his life in one without you?
Taking the week-long repite break is not just a bit of a holiday for you. It's vitally necessary for your physical and mental health.
Also, you don't uproot your entire life and move to another place because your spouse with advanced dementia wants to live back in his hometown. That's ridiculous. You are the one responsible, not him. You do what makes your life and your caregiving of him easier for you. He doesn't make the decisions anymore. You do.
I see you asked the question about how to approach DH about going away. You got good answers but I did not see where you were told to wait till the last minute to tell him. So now he has time to ponder and worry about it. They get into a "loop" and nothing you say or do will change their mind. Go on your trip, you deserve it. He will be OK.
If you take your husband out of the facility after your trip you will have a very difficult time getting him out of the house back in a facility when you are burnt to a crisp ( which will happen ) . Also , waiting too long to place someone can make it much harder for them to adjust when the dementia is further along.
My mother was a controlling , manipulative person . Dementia was just “ pouring gasoline on a fire”, her doctor’s words . That is when the doctor said Mom had to be taken care of by non family that she could not manipulate and control. Your husband should not be in control of where you live either. He is past the point of making rational decisions .
And now husband has decided to call in the Big Gun - his lawyer brother - and you are threatened with losing POA for your husband and with his will being changed, which, reading between the lines, wouldn't benefit you. If your husband is in stage 5 dementia, I doubt that he can change anything legal, but sometimes people retain lawyers to intimidate others. That may be the case here. Don't fall for it.
Go on your trip. You deserve a break. Before you go, make an appointment to consult with a lawyer in your present state of residence as soon as you get back. Don't tell anyone, especially husband. Dementia has taken over his brain. Paranoia is a symptom, and you're now the bad guy. Since husband has brought his lawyer brother onboard, and even if husband can't change any legal things, your lawyer can speak for YOU and intimidate right back. He can also make sure you know your rights and advise you about POA - which you can resign, if you choose.
As for never having children and assuming that handling childlike behavior is anything like dealing with a dementia patient's behavior, ummm - NO. It's not the same thing at all. Children, if corrected, can learn. Your husband is a long way down the dementia pathway. He cannot learn new things. No point in correcting him. You're stuck with who he is now, and you need to decide what to do about it. The worst part is that he'll get worse and worse no matter what you do. Then you'll be stuck with who he is then. And you'll have to adjust all over again.
"I've only been allowed," etc. is what you wrote. Allowed? That doesn't speak to me of a wonderful marriage. His guilting of you doesn't speak of a wonderful husband. "Magical and loving?" Not in my book. I'm so sorry, but this isn't a marriage of equals. You say he's controlling. How have you been able to stand it?
I sincerely hope you find the help you need.
If you crash and burn, you'll be of no use to your DH anymore.
Realizing he's probably overly attached to you (which can be very sweet or very annoying)--you do need to take time away from him to recharge your batteries.
Since he has family on board with making visits, etc., you should be able to leave w/o much guilt.
Ugh--lawyers. (I can say that b/c my son is one and when he gets all 'lawyerly' I can't bear to talk to him!) I'd simply block his number from your phone and let the family that's going to step in know that lawyer brother is trying to blackmail you. That's what it is, you know, forcing you to give up everything for your DH in fear of losing everything.
At his stage of dementia? Brother is not going to be successful at changing anything, but you can talk this over with your own lawyer.
I understand your terminology of 'allowed'. It's not what people think. It's mostly you just keeping the peace, right? Not the horrible kind of overarching control that some people hold over a spouse. My guess is that you have CHOSEN to be there for your DH and have put your own life on some kind of hold.
Please take the trip.
I walked on eggshells to "keep the peace" with my ex until I said ENOUGH of this nonsense, I matter too!
It is obvious that he is in total control of you. You were not allowed to go on another vaca with your girlfriends? Kidding right?
You as well have unhealthy attachment issues, and are very codependent on him.
Now you say that you will move back to his hometown because that is what he wants, really? You posted about that before and most everyone said "Don't do it".
Now you are actually contemplating doing his respite in that town? Why?
Either you stand up for your rights this time or forget about ever being an independent woman.
The BIL has a dysfunctional marriage? Might want to take a good look at yours.
Your husband has dementia and certainly is not capable of making rational decisions and he is manipulating you. His speckled marriage makes complete sense based on what you are relaying to us.
Scratch the "Guilt" deal, it is keeping you stuck, it is a tool people use to not do what they want to do, it gives them an excuse. The buzz word of the 21st century needs to be put to rest.
The ball is in your court, stand up and be counted.
Go to Florida.
My dear the universal equalizer in such relationships when it's an old guy and a much younger woman is:
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
A woman who made such a situation for herself will get no pity from me. I don't believe in being financially dependent on a man. I had two husbands and wasn't dependent on either one of them and didn't take from them when we divorced either.
STOP FEELING GUILTY AND JUST GO.
I have NEVER once used the word “allowed” in my marriage! I would rather be without a partner if I needed my husband’s permission to be an equal partner.
As far as I am concerned, the word “allowed” should be banished from a wife’s vocabulary!
Erase the word “allowed” from your brain today! Replace it with, “I will.” Or might I suggest, “I matter equally to my husband.”
Lady, plan a trip to go around the world if you like. Every living soul deserves a break from caregiving!
The world will not fall apart if you take time off!
By the way, sacrificing everything to ‘keep the peace’ never works. I guarantee that it will backfire every time you try it. Women who do this end up being used and are completely miserable.
"He is scared and anxious alone."
OK.
He is allowed to feel how he feels.
Do not let HIS fear rule YOUR life.
PS My Mother: fearful, anxious, only wants Dad.. threw many a tantrum on the way to respite care. Put on the SAD FACE for family.
However, sneaking in showed her smiling, laughing & enjoying the company of others! Busted lady!!
Saw me.. Oh it's terrible here..
Don't be fooled by dementia showtiming. It can be a proper medodramatic trajedy act as well as the good polite cizitzen for the Doctor.
PPS "... asked him to get the POA changed and re do his will"
Typical dementia + paranoia reaction. Especially by a strong or controlling personality. *Do as I say or I'll change my will*
Yawn. Try it man... Stage 5 dementia. Not gunna happen.
My mother made ME anxious. So I went on a TRIP FAR AWAY once and after a few days I relaxed for a few days . I had forgotten what feeling relaxed was like .
You have been a very quick learner !
He will be alright while you are gone.
The important thing now is that you get a break.
If you have been his sole caregiver you have to do more to help yourself.
Some options are:
Hiring caregivers that can help.
Looking into Adult Day program. Even 2 days a week will be a blessing for you.
Lastly, considering placing him in Memory Care. He will get 24/7/365 care, he will be safe and he will have the level of care he needs.
None of these are easy decisions but the journey with dementia is not easy nor one you can do alone