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LonelyDespair Asked December 2020

No Ability to Handle Situation...

It seems like most of the situations I read about in this quorum revolve around Children of parents with Dementia or Alzheimer’s or wives with husbands of same but rarely of Husbands with Wives suffering from these disorders. Perhaps it’s because Husbands are reluctant to seek help when they have been the ‘Fixers’ of problems and now have encountered a problem they can’t ‘Fix’.
I am a ‘Fixer’ who has met his match and am sadly at a loss to come up with a solution.
As my wives Dementia creeped up on she’s had the normal symptoms, short term memory, forgetfulness, accusations of adultery, etc. recomposition of past memories, all conditions that could be dealt with by agreeing with her or changing the subject (Not the Adultery, I drew the line there). It’s the anger that is driving the situation, now. She has always had a hot temper, but manageable, or we wouldn’t have been married for 62 years. It was a series of anger tirades that brought us to memory care before either she or I suffered severe injuries. First the hospital, and after a two week stay where meds were adopted, the decision was made that I couldn’t manage the care for her at home (Incontinence, Spotty eating habits, neglecting taking her meds, and still going through angry moods). I believe I have selected a good Memory Facility but even though I visit her regularly about every other day bringing one other person (Either one of the daughters, or the Grandkids or just friends that she is acquainted with), when talking to her on the phone she insists that I never have been up to see her and demands to know why not. Similarly, she talks non stop on why I can’t get her out of there and bring her home. Not easy to shift to other subjects when she is so locked on these two complaints. Visiting situations have disintegrated because of Covid-19 and inability to touch or hold her which has a calming effect. Can’t do that over the phone either. I’m not blaming her as I would feel the same if I were in her place. The thing is that I don’t want to end our final days at odds with each other. I want the old adage, “Love will Conquer All” to prevail but don’t know how to achieve that goal.

sjplegacy Dec 2020
LonelyDespair- your screen name says it all. But you wouldn't have been married for 62 yrs if love had not already conquered the bumps in the road you've experienced. A couple cannot live together for that long and not have disagreements and occasional fallout. But whatever those times were, you knew your love for each other would win out. When my wife was upset with me she would say “I love you but I don't like you today!”. I'm sure you and your wife have had similar days. It's part of the marriage experience.

Throughout your 62 yrs love HAS conquered all. However, we all have a date with destiny. My marriage of 52 yrs came to a close 3 yrs ago next month when Alzheimer's ended our life together. There are many challenges in life that we have no control over. One of the greatest is seeing the one we love most slowly slip away. Their behavior is mostly involuntary and unexplainable, that's why we as caregiver's have to change how we relate to them. We certainly don't love them any less, in fact, now is the time they need our love most. You said you're not blaming her for her attitude, in fact, you say you understand it, you would do the same. That alone shows your empathy for your wife's situation. It shows your love for her. Maybe you didn't think placing her in MC was a loving act, but I can tell that it was.

One of my favorite prayers is the serenity prayer which begins “Lord, grant me the serenity to accept the things I cannot change...”. You cannot change how your wife responds to you, her anger, her pleads to take her home, or how the disease affects her. But you know she loves you still. That's the despair of it all. Maybe the word “serenity” in the prayer means “thick skinned”.

I know it's heartbreaking not to be there to hug and hold, to share smiles, just to touch. This time of sadness and grief might be tempered with the gratitude of knowing and loving her for all these yrs. Your goal has already been achieved.
LonelyDespair Dec 2020
It’s terribly difficult but I think you described the situation very well. I take comfort in your advise and your empathy. Helps a lot...
BurntCaregiver Dec 2020
This is a sad and tragic situation. You did all you could for your wife. She could not be different and her dementia would not be better if she was back home with you. As for "Love will Conquer All" those words are not true. There is no way for you to achieve that goal unless you've found a cure for dementia or have a time machine that can make your wife young again. Putting her in memory care was the right thing to do because she's getting properly cared for and many times it's not possible for a dementia patient to get the proper care they need at home. Take time for yourself. Make sure that you still enjoy life and get socialization. You're doing right by your wife. I know it's hard because she doesn't think so, but some part of her might still realize it.
LonelyDespair Dec 2020
Thanks for the ‘Reality Check’ as difficult as it is to accept. In the end I have no option but to abide by what is unavoidable but I will cling to every moment of lucidity and every second I see or feel that somewhere in there she still Loves me.
Thanks for your concern.

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AnnReid Dec 2020
Give yourself permission to leave, if this happens when you’re there. Say “I love you dearly but I have an appointment and have to leave now”. Give her a kiss and a hug, turn around, walk out.

It is not only OK to do this, it is also a very humane way of handling something painful for both of you. You are absolutely right, that you (YOU) will feel better off leaving on pleasant or at least civil terms.

YOU must absolutely convince yourself that what you already know is TRUE, it is also RIGHT and LOVING. You found the very best place for her that you could find, she is safe there, well cared for, and well treated, and most important, if she were in your home, she would be no happier than she is where she lives now.

You have a VERY good sense of what your circumstances are, but part of your job is to remember that you have a human responsibility to her, BUT ALSO TO YOURSELF.

Sending hopes that you can find peace in having done all you could do, and all you have done.
LonelyDespair Dec 2020
Was up to see her this morning and started out on the rough side with the accusations of never calling or coming to see her and asking to get her out of there but eventually the love we share broke through the gloom and we both were able to express that love we felt for each other before parting.
Thank God for those rare moments of which we never know will occur again...
AlvaDeer Dec 2020
Those who lose their brothers, sisters, fathers, mothers, husbands and wives while still the person lives are all suffering with you the loss of the ones they love. You have done and are doing all that can be done. If the Memory Care tells you that your wife is relatively comfortable without visits I would cut the visits down if you are able to personally; the often can be just an added agitation. I am so sorry for the grief.
disgustedtoo Jan 2021
I agree - it is important to work with staff and find out how she is when you are not there. Given such a long relationship, it would be harder on you not to visit as often. but if she is doing okay between visits, it might be best to reduce how often you do go. You could visit 20 times in one day and she'd still think you haven't been to see her!

The hardest part with my mother was hearing that she saw a pic a staff member took of me when I was delivering supplies. She asked why I didn't come in to see her, didn't I want to see her? Virus rules kept me from those visits (regular in the 3 years prior to lockdown.) Even worse, I did go twice to scheduled visits, once outside in nicer weather and once inside, but with masks and 6' spacing, due to her dementia, bad hearing and worsening eyesight, it isn't clear that she even knew that I was there. I do wish now that I had broken the rules, removed the mask and stood next to her, so she'd know it was me. She'd had a stroke before the second visit, but was holding her own. Sadly she had another stroke in December, and although they moved her to another room away from MC (no one is allowed in there), I can't say for sure if she knew I was there. I did stay close and did remove my mask, but she was beyond capability of communicating. She was making eye contact, but there's no way to know what she knew or felt. We lost her the next day, while I was with her.

Do try to keep tuning out the negatives she spews. You know none of it is true. Try to stay upbeat when visiting, bring some favorite items, either things she liked or snacks she enjoys. Ask staff if there are times when she is "better" and visit then. If she becomes upset and can't be redirected during visits, make some excuse to leave and go. Fibs about taking her home can sometimes work briefly. Mom badgered my brother for the first 9 months to take her back to her condo. Suddenly her focus changed to a previous home and her mother, somehow connecting the 2 (it was our house growing up, her mother would stay for a few months with us, then other daughters' homes.) When she asked me to drop her off at her mother's, I merely said it was a little late in the day, not on my way home, maybe tomorrow. She said ok, then promptly asked if I had a key to that previous house. I said not with me, I'll check when I get home. That was enough to satisfy her for the moment. It gives them some hope - false hope, but they don't know that. If it can calm her, try it. Blaming her stay on others, such as her doctors, until she gets "better" can sometimes work - if it does, it transfers the anger, even just momentarily, to someone else.

Mom didn't have a phone in her room, due to her hearing loss, but she was always asking staff to call her mother and they would make excuses for the phones being out of order, or promise "later". Usually in a few minutes, it is forgotten or they can be redirected to some activity or a snack with coffee or tea.

There are some men on the forum who might be able to offer some help. I don't think what you experience is a lot different than what we all go through, but love for a spouse is definitely different than love for another family member. Hold on to the good memories you have. They can help you in those times when seeing her gets you down.
lealonnie1 Dec 2020
You said in your comment just now, "......eventually the love we share broke through the gloom and we both were able to express that love we felt for each other before parting."

Keep going to visit your dear wife precisely FOR the moments you mentioned above. She WILL have those times of lucidity where she'll show you the love you remember and you can treasure that for the rest of your life. You both STILL love each other, and you placing her in a safe environment is PROOF of your love FOR her, my friend. Make no mistake about it.

All the best.

LonelyDespair Jan 2021
Thank you all for your outpouring of support. Initially I was only looking for guidance on how to deal with my wife’s dementia but i never expected such an avalanche of kindness, compassion and support that you have bestowed upon me as well as loving support for my wife. Words cannot express the realization that there are so many wonderful people willing to pause for a moment in their lives and offer their experiences and support. God Bless every one of you. You are all very good people..
LonelyDespair

Jamesj Jan 2021
There are some who responded for you to bring her home....don't do it.  She has 24 hr care right now and needs it.  You will kill yourself or drive yourself nuts trying to provide the same care.  She is not mentally the same person.  Trying to rationalize the actions of someone who is mentally ill is crazy. (pun intended)  Covid has thrown a wrench in everyone's plans of visiting their family. The holidays make it all the more sad. Don't let that lead you to change your mind about placing her.  She is where she needs to be.  It took a good couple of years for them to get my moms meds right so that she was more pleasant to be around and not in a constant state of rage, mistrust and accusations. Even if you visited her twice a day, every day, she would still accuse you of not coming because she can't remember.  See her when you can, call her when you can and on the days you are not up to it... don't.  You are still taking care of her by getting her the help she needs in a safe place.  This is devastating for you and it will take you a while to go through the stages of grieving the loss of who she once was and what you once had.  Just know that you are a good husband and a good person making good decisions for your wife. 

Take care.
NobodyGetsIt Jan 2021
"Jamesj,"

I believe your words can be equally applied to those other than just a husband/wife situation especially when you said "you are still taking care of her by getting her the help she needs in a safe place." The staff are the ones with the experience to handle all kinds of situations that us family members aren't!

Great point to remember for all of us who have a loved one in a Memory Care setting.

I'm glad you commented to this gentleman from one man to another!
Grandma1954 Dec 2020
I will make a comment about the phone calls first.
It is difficult for a person with dementia to recall people. You will read comments here about a son, daughter, wife, husband not being recognized by their loved one. That is when they are standing right there. On the phone it is a voice that is essentially coming out of a box. there is no face, no point of reference to the voice. It is also difficult for someone with dementia to understand all conversation so they rely heavily on facial expression and with a phone that is gone as well. And often times as with any conversation the words said are fleeting so the conversation could be forgotten as soon as you hang up.
So if she forgets you called, that is part of the disease. When you visit she may forget you were there not long after you leave.

One other point about "bringing her home" often when a person with dementia says they want to go home it is not "home" but a place where they feel safe. Just reassure her that she is safe, you love her and that you want the best for her and she is home. If you are in her room you can point to her clothes, her bed her chair and say this is your home. But she will forget.
If the visits are stressful for you or for her keep them short. Often as a person gets more stressed the more anxious they will get. People with dementia like and need routine and often visits will "upset" their routine. Time your visits with lunch or other activity so you can keep the visit short, say "I guess it is time for your lunch, let me walk you to the table" once she sits down and is "back in her routine" you can leave comfortably.

Daughterof1930 Dec 2020
Sounds like you’ve been an excellent caregiver for your wife and looked after her best interests with love. It’s beyond sad that she’s in a place mentally where she can’t appreciate you or your relationship. Dementia is relentless and cruel and has robbed you both. I hope you can accept her inability to be better or change, and adapt yourself to care for you. She still needs you to advocate for her and watch over her care, but don’t listen to the tirades, you can’t fix or change them, do some activities you enjoy and be kind to you. I wish you the best
LonelyDespair Dec 2020
Thank You, Will try to follow your advise.
jacobsonbob Jan 2021
"It was a series of anger tirades that brought us to memory care before either she or I suffered severe injuries." This in itself is a red flag that shows you have done the right thing. If your wife gets that angry, she could attack and injure you. The fact that she has "always had a not temper" and still has it but now complicated by dementia makes it imperative that you are protected from her, and she is in a place in which she can receive appropriate care and help.

Your life and safety are important, too.
NobodyGetsIt Jan 2021
"jacobsonbob,"

A major theme we see woven throughout many other people's situations on the forum is your point about "she is in a place in which she can receive appropriate care and help."

It is crucial for both the person with (in this case) Alzheimer's related dementia and for us who have taken the role of their caregiver especially, if that role began in the home setting.

It benefits all parties involved!
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