I'm 88, my wife is 89 and I'm having a tough time trying to follow the rules of a care-giver dealing with somebody with dementia (probably somewhere between stage 1 and 2 but with an escalating slide downhill). It's one thing reading about dementia, it's something else dealing with its reality. The inconsistency, the sudden delusional behavior, the demand for control and the unwillingness to listen to reason. I know I shouldn't argue with her, shouldn't try to change her mind with logic but I just can't help raising my voice when I get so frustrated I can't change her back to the person I knew. What's the trick? How do you turn the cheek and lose the "battle" when you know you're not going to win the war?
The thing that got me over the hump of where you're at is prayer. Every morning when my feet hit the floor that's my trigger to pray. I ask for the strength, endurance, wisdom and patience that I'll need for that day.
Turning the other cheek day-in and day-out is easier said than done. When it crescendos to the point of blood pressure ringing in my ears that's my trigger to remember that her brain is broke. Things that she says or does during a delusional episode, she probably won't remember anyway.
I don't really blame myself for her condition as some of you feared I might, and I don't blame her; I understand she has no control over how she interacts with the dementia. That said, it’s very difficult at times not to take what she says personally. I have occasional thoughts that maybe the disease is simply releasing long suppressed feelings.
Adding to our problem is that she also suffers from a lack of trust of anyone’s advice on anything – including from her doctor who, she claims, doesn’t know what she’s doing and often prescribes the wrong medicine. You should know that my wife had a medical-related career serving as a bacteriologist in a hospital which she claims makes her more knowledgeable than her doctor, her pharmacist and maybe God. Certainly me. You should also know that my wife has a self-recognized memory problem and hasn’t worked in medicine in 40 years. Memory Care sounds like a pretty good option to consider but is it possible without her cooperation and acceptance of her condition? She has a diagnosis appointment with a Neurologist in March but I have strong suspicions I may have to tie her up to get her there.
I have another question: Can I talk to her about her disease? She understands she has a memory problem but I don’t know if she thinks her behavior is abnormal. Is being aware you have dementia a good thing?
This is my third attempt at preparing a response to your very meaningful input. I started off whining about what a tough life I now have, tore it up and wrote about all the maddening incidents that justify the dementia label currently on my wife’s forehead (it sounded like I was looking for a jury’s conviction), tore that up for this version which actually is beginning to read like a combination of the first two.
And to top things off, today was a “good” day. You know the kind I mean. Her old self, loving, caring, personable .and . . . . quiet. Which, in some ways is just as frustrating because I started to question whether I’m over-reacting. Maybe we don’t need help. And then I remind myself it’s not the first good day we’ve had but it may be the last.
To Scampie – How ironic and insightful your relating dementia to alcoholism. I happen to be an alcoholic. Or at least I was – and experts say there’s no such thing as an ex-alcoholic. You would think going on that journey would better prepare me for the life of a care-giver. I know I would never have made it through 44 years of “one day at a time” sobriety without the love and support of my wife and kids. I’ve got to do a better job of remembering that.
My brother and I talked about his diagnosis often.
He had an awful car accident which hospitalized him. I live in No Cal and he in SoCal. When I went there he was "incidentally" diagnosed by his symptoms with "probable early Lewy's dementia". As he said laying in the arms of his neighbor after the accident "I KNEW something was wrong". Indeed he had been suffering hallucinations he tried to pass off as some sort of dreaming (most occurred at night).
Once he KNEW what he had he rushed me off to his attorney to make me POA and Trustee of Trust. Sold his last little home, and we chose an ALF for him, visiting several.
We spoke often of his diagnosis, his prognosis, what we could do, what we couldn't--even to the point of discussing his creating with me his final exit right now. We knew we had limited time for rational thinking. He would discuss symptoms with me all the time, his fears of loss of control, it being primary in his life--control. And we discussed openly and honestly every single thing. We could laugh together, cry together, be scared together. He hoped to die before it could get the best of him. And he did, of Sepsis, age 85.
I have not heard others speak of open honest talks with their demented loved ones. I am a nurse. He and I were all our lives EXCEPTIONALLY close. He was the Hansel to my Gretel in every dark woods of life and in the end I could pay that back a bit, though never enough. We had ALWAYS been honest with one another. IN the end that let me into a world that was a wonder, at the same time a curse.
I would give it a try, bit by bit, and approach it always ready to back step, always ready to let your loved one take the lead. It is their decision; there's nothing quite so private as losing you mind, and the fears that come with it.
Good luck.
My aunt, who I love dearly is a different person. She has chosen to cut me out of her life because she couldn't control me. It's sad. The saddest part is I don't know what stage she's in because she refuses to see a doctor/neurologist. A friend of the family estimated level 4 or 5.
Good luck to you and I wish you well in overcoming this.
A good way to cope is not to ever blame yourself for your wife's dementia. Don't beat yourself up if you have to ignore her for periods of time or have to bring in elder-sitters or put her in adult daycare because you need a break from her. You're a human being just like everyone else and no human being has unlimited patience. Not even dementia "expert" Teepa Snow who I am convinced believes she sees an actual halo over her own head.
So, if you fly off the handle and get cross with your wife or even yell a bit when she's really acting up, it's okay. Better to let off a little steam then to tolerate all the arguments and abuse then blow up like an old pressure cooker.
If you're planning to keep your wife at home for as long as possible you have to work out what this is going to look like now in the present and in the future. You will have to bring in outside help. This may even mean caregivers being in your home 24/7. You will have to work with her doctor and ask him to start prescribing medications to keep her calm and probably also sleeping medications at some point. There will have to be a protocol in place if something happens to you like you're needing to be hospitalized. How will that work?
Or you may have to put her in memory care. It's okay if she needs to be placed. That's no reflection on you as a husband or a caregiver. If she becomes too much to deal with at home, you will have to place her. Many people have to make this hard choice and not one who ever put a loved one in memory care ever caused their dementia. So there is never need for blame or guilt here.
Good luck to you. I truly hope you can make good plans for your wife and yourself.
I'm a paid caregiver. Also, I'm a member of Al-Anon. I apply the principles of my program to dementia clients. Believe it or not, I noticed some of these behaviors were similar to the alcoholics in my life.
One case I had, the client could be very combative at times. We can't force people to do what we want. So, I would just wait until she was much calmer to try again.
One thing I learned is never argue with an alcoholic. The same applies to someone with dementia.
I follow slogans: Easy does it, and live and let live.
Setting boundaries is a must. Get some downtime for yourself. Being around this 24/7 will drive you nuts if you allow it.
I know some days you feel like you want to scream. Seek out support groups that deals with dementia.
Hire in home caregivers to get a break. If you golf or want to catch a movie, get dinner out; feel free to do so.
I hear that about never arguing with an alcoholic or person with dementia. Whe you think about it, both are not in their right minds.
No one has an unlimited supply of patience though and that is a fact. Also, abuse is abuse regardless of the condition of the person it's coming from.
Trying to care for a verbally abusive argumentative dmeentia sufferer on your own with no help will create the perfect conditions for elder abuse.
Acceptance needs to come next, which will hopefully change your thought process and the way you respond to your wife.
With your wife logic doesn't live there anymore, so it's best to just go along with whatever she says or does, as she can't help that her brain is now permanently broken.
Despite everything your wife is going through, please know that she is still in there somewhere and that she still loves you very much.
And if her care gets to be too much for you, you will have to get her placed in a memory care facility of your choice where you can get back to just being her loving husband and advocate and not her overwhelmed, angry and burned out caregiver.
Dementia sucks and this journey will push you to your limits, no ifs and or buts, but when it is all said and done you will come out at the other end a better, more compassionate person. So hang tight and just do the best you can.
God bless you.
I agree you need help coming to the home to give you breaks .
At some point sooner or later. placement will be necessary to preserve your own sanity and life . Many caregivers die before the person they are taking care of due to stress . If you die your wife will end up in a facility anyway . Think about looking at memory care facilities for her .
My advice is find ways for you to have a break. You don’t say whether you are together 24/7 but if you are, and you are responsible for all her needs and keeping her safe and content that whole time — find someone to give you a break for at least a couple of hours every day. The cost and the change to your routine are worth it compared to your own sanity.
I gave my mom the same advice but she was never able to follow it. She hated aides in the house and so did he. She refused to consider adult daycare or a facility for him either although she hated the sight of him. She was passive too, wouldn’t prevail upon him to shower or change, wouldn’t go into his room when she knew he was dropping and hiding food in there, hiding important mail like property tax bills.
I took her out to lunch or on errands sometimes and that helped.
If her behavior is aggressive or dangerous, there are probably meds that can dial it back. That helped with my dad.
best wishes to you.
Same comments to Flavia, too.
I have no magic solution, sorry to say. Just keep trying to redirect or distract when the delusions happen. Consider whether your wife is hungry, uncomfortable, tired, or in pain? Sometimes our loved ones cannot articulate a source of distress which can affect them severely and in surprising ways.
Today, hubby accused me of ignoring him, not visiting, having a boyfriend... wanted a divorce... was shouting and crying and carrying on. (He is in a care facility not far from our home.) It shocked me to my core and there was no reasoning with him. He had never acted like that before!
I visit every day and stay for hours, bring him treats, help him groom and dress, take him for walks...
Even the facility staff noted that this was out of character for him.
Turns out, he was overdue for pain med (he had hip surgery not long ago).