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.
Can you bring her some visual reminders of your love and presence which she could see and focus on while your are not there? Cards, framed photos...
write her a poem about how wonderful she is and how much you love her and frame it... I promise she will love it. I have leaned that anger in dementia patients can be an expression of fear of what is happening to them. So she lashes out. It helps me (a LITTLE!) to remind myself that when my Mother lashes out at me. Boy it’s hard, so hard.
Bring her food she likes (for some reason my Mom will remember something she liked that she ate for a day or so when she can’t remember anything else).
COVID has made this 100 times harder on you. Do what tou can, go as often as you can, as frequently, then call everyday.
hang in there, friend
Second. You are stronger than you think you are...
Third. My experience is with my precious Mom-In-Law whom I love just like my own mom and I am married to a wonderful "fixer" / rational thinker.
Here's some things to consider:
Once you are able to accept that the beautiful person you have shared your life with now lives behind a curtain - so to speak - the easier it will be to resolve in your mind that you are now taking care of her temple - the place where her soul resides. Alz/Dementia occasionally will allow the person to peek through that curtain and those moments are very precious. Those are considered short spurts of clarity and would be considered good days. Most days will involve human compassion and wisdom to accept this new "normal."
It's OK to step back, set some boundaries and live your life. It does not mean you are unfaithful, unwilling or uncommitted to ensuring she has the best care. It is good you have family around you for your support.
The best piece of advice our family neurologist (specialized in geriatric disease and health) has given us thus far is: Remember, you are dealing with the disease - not the person experiencing the effects of the disease. Anchor yourself in knowing there will be good days and bad. Leave them at your doorstep when you return home after each visit. Most Alz/Dementia patients know in the beginning stages something is happening to them which makes them feel scared, afraid, and lacking any personal control to do anything about it.
It sounds like she is in the earlier stages of the disease because angry tirades and aggression are key symptoms that seem to be mostly controlled with medications. Attempting to reason with her will only cause you considerable heartache and frustration. Perhaps consider developing a series of repeatable statements to address her concerns each time she brings them up: (ie. Q: "Why can't you take me home?" A: "You have been diagnosed with (early onset, moderate, advanced) dementia which requires specialized care. You will remain here so these trained care providers can ensure you do not endanger yourself."). I know it sounds very basic and perhaps contrite - but very specific statements have allowed my husband to communicate with his mom to address these types of questions.
So what can you do about engaging and re-directing?
Heres what may help:
Sensory experiences such as music, pictures, smells (aroma) and interactive toys (yes - that's right) have been really good for many patients including my Mom-In-Law. These will often create calmness and security.
Music helps a great deal - especially music from her past
https://www.mindcarestore.com/music-player-p/mc-2115.htm
Pictures from the past (no so much current day) when she was a child or teen. This may allow her to grab a memory and describe it to you. Old high school albums, wedding pictures, past trips. (Not necessary to leave these items behind - just bring them for a visit and promise more on the next visit).
Smells - bring and spray your cologne or her favorite perfume on her pillow as a reminder you are nearby.
Interactive Toys
Currently my MIL has 2 interactive cats, 1 interactive dog and a small interactive bird (for which we can leave messages for her to hear) have been great because you can move your conversation towards care and need of these "friends" and make her feel "responsible" for them.
JOY FOR ALL - Orange Tabby Cat - Interactive Companion Pets - Realistic & Lifelike$99.99Amazon.comFree shipping
Does this always work? No. But it is a start. And it may give her something to feel like she has some control. Her anger is frustration and her frustration is fear.
Don't give up. Be kind to yourself. And let us all continue to hear from you.
After reading through several responses, I can say, I know exactly where you are. Caregiving is not for sissies. My father and our family have been through the same situation when we had to place Mom in MC during this wonderful covid period. A week after placement, my parents "celebrated" their 63rd wedding anniversary. My parents have always been "dating close" to the point, as kids, we used to tell them, "get a room" all the time.
Upon placement, Mom had a tough time with some aggression and exit seeking, but meds and reassuring phone calls with dad helped ease her transition. Though my mom was unable to use technology, staff would help her call us, or bring her to a phone when we called the desk, but it was always the same thing...accusations, where have you been, and the worst, "Why did you throw me away?!"
Brutally hurtful, yes. I cried after every phone call or visit...we could only physically see her once a week due to covid scheduling. Staff always told us that she was doing fine and that she was happy there and enjoying activities. She was a staff and resident favorite, always talkative and smiling. With us, she was crabby, they didn't feed her and she never did anything..."just take me home." Then I finally realized....saying the things she did, with her dementia, was her only way to tell us how much she loved and missed us. Instead of getting upset or arguing with her, we would just tell her, again, how much we loved and missed her too. It seemed to satisfy her and made us feel better.
So, I guess my advice is...it's all about perspective. Our loved ones can no longer communicate the way they used to, so it's up to us to figure out what they really mean. Like my mom and dad are each other's forever and ever, your wife still loves you as much as she did the day she married you. And she says that every time she argues with you. I wish you peace my friend!
First of all, I am so sorry for your situation. My mother is in her 5th year of Alzheimer's and I am her main caregiver so I understand how difficult your life has become.
It is obvious that you love your wife very much. So it is very hard to hear her accuse you of adultery and that you never come to visit.
I have a suggestion. You know by now that you can not convince her of the truth. All she knows is her reality in her mind. So instead of trying to convince her of your reality, why not join in her reality and have some fun while you are in it. It might calm her down if she feels acknowledged.
For example, when she tells you that you haven't come to see her. Say she's right and that she must miss you so much.
When she accuses you of seeing other women, tell her those other women can't compare to her. They tried to keep you from coming to see her but you escaped, that is why you just now got here to see her.
Be creative.
I don't know if my suggestion will work. If you do decide to try it, let us know if it works.
This phase your wife is going through will pass. For my mom, it did. Now my mom hardly talks.
Hugs to you and your daughter.
After this explanation he also stated it is best to not argue, I found it difficult to be accused of taking his shoes or turning off his TV while visiting him at the Memory Care facility.
While it is great you reached out, as most men do not, and being a fixer is a wonderful trait, while you wife isn't fully fixable, the best fix you can do is continue on the path you are, bring friends, family etc as allowed, visit frequently. Accept the fact your wife is not doing these things to be mean or to create problems, but she honestly doesn't know what she is doing and deep inside she does love you. Whenever possible try to redirect a conversation especially if it is one that will lead to an argument. Such as when she accuses you of adultery.
I wish you the best
It's all just part of the disease and you can't argue her brain back to reality. Accept it and let it go, as hard as it is. Try to agree when you can to keep the peace. I hope that you find many more days of agreement.
This is GREAT feedback from you! If we can even make your life or anyone else's a little more tolerable, we've achieved something!
(Also good to see you back, despite some of those not so helpful posts... we keep trying to 'edimacate' them, but some people just have cemented mind sets.)
So sorry you are going through this. My husband and I were talking that Alzheimer’s and Cancer are two of the worst endings. He has cancer. He is still very functional but the end is near with stage IV metastasis. We are not the couple we used to be. I grieve that a lot. Somewhere I read that we are no longer marriage mates but rather we are now caregivers and health advocatesto our spouse. I have been thinking of myself more in that role than the wife and it has helped. Roles change and reposition in marriages. Mother of children, romantic travel partner, etc. I feel I’m in a different season. Make sure you have identity apart from your role with her. I have found the more self definition I have the better partner I am. We are losing them a little at a time and this is very hard. Know you are not alone!
:-(
Hope there are at least some good moments to be shared and remembered.
You have made the right decision in placing your wife because your health and well being are even more important now..... after all you are supervising her care. And remember......... the woman you met and fell in love with all those years ago..... really would not want you to put yourself in danger and she would go berserk if she thought you were putting yourself on a guilt trip. She is where she needs to be at this point in her life. Do not even think of trying to bring her home. 24/7 care expensive as it is, is not going to help you or her. Visit her when you want to and can (but be prepared to find that every other day is enough for both you). If she becomes violent you can leave and end that day's visit. If she is calmed by your presence, stay and be the loving husband that you are instead of a beleaguered and frustrated caregiver.
I wish you blessings, peace, and serenity on your journey. Please talk with us on the forum often.
Thank You.
Although I am one of the ones you mentioned who is the only daughter of a mom with Alzheimer's, I do understand how you want to "fix" things so you don't end your final days together at odds with each other after being married 62 years.
Yes, I know the old adage, "Love will Conquer All" which is admirable that being your goal. However, we can't control how things are going to play out as much as we may want to especially with this cruel, unpredictable disease.
You may have to come to a place of acceptance that if you want your final days with your wife to be pleasant or at least civil, you may have to create that image within your own mind instead of thinking of what you couldn't accomplish.
Her always having had a "hot temper" as you can see has only become worse with the disease and is exacerbated by many triggers. You said it was "manageable" throughout your marriage but, you still couldn't change or control it then and you won't be able to now. The best thing to do, is let that aspect go - it's part of who she was and part of who she is now- disease or no disease.
This disease has a "mind" all its own (no pun intended). So if it doesn't end well on her part, I hope you will be able to say to yourself that "love did conquer all" - for how YOU helped her in the best ways you could.
I wish you well as you continue your journey!
Lonely Despair
Your life and safety are important, too.
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!
Take care.
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!
No matter how great you think a facility is, it isn't.
Put yourself in her shoes, would you want to be there?
Lover ones put in facilities usually get depressed and lose their will to live.
I pray that someone can come along side you and put their arms around you and give you a big hug. You are a good husband.
Colleen
Beautifully said and encouraging words for "LonelyDespair."
He is a good husband and I'm sure he really wishes he could hear those sentiments from his wife but, he will need to know it in his heart.
LonelyDespair
Yes to the maintaining all your own memories. Sooner rather than later, that may be all you have left, even while she is still alive, but has lost all recognition of you and your past. Hold those memories dear!
As for the "when can I get out of here," some people suggest little lies (instead of saying "never") but I prefer to change try to divert to other subjects such as what she would like to do at home, what are her favorite colors/things at home... it may give you clues to what would help her settle in a little more.
Divert conversation away from getting out sometimes can work, but often it doesn't. Never say never... little white lies, leave the door "open" in their mind that if some condition is met (doctor gives okay is often a good one, as it lays the blame on someone else!) We know the door will never open, but it gives them hope, even for a brief few moments before they forget again.
Remember that she will die, perhaps before you. You will need to manage after she is gone. Keep some good things in your own life, as ‘insurance’ for at least a little happiness if that happens. The wife you always loved would want you to be happy.
You are grieving. Is there a Grief Share group in your area? You can look them up on-line.
I am so sorry that this is happening. We are here to listen. It’s not a soap opera. It’s real life. Come back and share as much as you want. We care.
Colleen
I know that you are always hopeful that she will at least be able to express some positive feelings for you when you see her but you are setting yourself up to be disappointed and I am sorry about that. She sounds like she was always a handful and that was never going to improve with dementia. I am sure this is not what you envisioned for this period of your life.
Here is the thing; she only looks like your wife. The person she was during her life is sadly lost to dementia. You have done a good job caring for her and she is in a safe place. While I don't think you will abandon her, visiting her is not going to make her adjust to the facility better. As said her, she will never understand what is happening and why she is there. They will need to give her some meds to make her more reasonable to deal with and that is common as well.
You need to try to see her less, and spend time at home or with family as you want to. There is still some enjoyment to be had and you mention that there are friends and family around. She seems to forget you were there so seeing her daily is only upsetting you and not really benefitting her.
My inlaws were the most devoted of couples. She developed dementia which worsened although she could still dress herself. Mentally she was further and further away and although he tried to hide how bad she was, out of loyalty, I finally got them to go to memory care. He had vascular dementia so he really needed it too. Not suggesting at all that you need to move there with your wife.
She was very argumentative with him and the staff. As she continued to get worse, she fell and broke her hip. She ended up in a different cottage after that and he went to visit her every day, maybe to have lunch or dinner. He was really distressed that she did not seem to want him around. She did not really care if he came to eat with her and she did not want him to touch her, hold her hand or hug her. He was so upset; he felt it had been his job for 70 years to take care of her. But this is the way a lot of dementia patients progress. So try to do some things that make you happy, or at least content. Her needs are being met so you can take care of yourself since I am sure your family wants you for many more years.
Following my visit with my wife on December 31st, 2020 as outlined above she did return to the facility and promptly went into anger mode swearing at everybody and refusing to follow directions, stating she was leaving the facility and taking swipes at the facility personnel. Unable to control, the Police were called, and secondly the Paramedics, where it was determined that she needed to be hospitalized. During this engagement she threatened to commit suicide if she wouldn’t be able to leave the facility of her own accord. They called me and notified me that they were taking her to Emergency and I went to the Emergency Ward to make sure she was safe and under control (They told me she was restrained and I didn’t ask to see her as by past experience that only heightens the anxiety with her and I was really not able to make the situation more comfortable for her.) They did determine she had a bladder infection and felt that some of her medications were not being effectively used in her diagnosis.
I went up this morning and she was restrained but settled down somewhat but that has only brought her back to the same old dilemma in which she is adamant that I have to get her out of the facility and bring her home. Being over the weekend I’m not even sure the facility will take her back in when the Hospital releases her. It’s just an ugly way to start the New Year...
It's possible that your frequent visits are just keeping the fact that she's not at home in the front of her mind, and she's not acclimating well. Consider taking a week off from the visits if you can bear to do so, then you can return to visiting again. Send her notes or letters while you're gone, but allow her to settle in with the community of her memory care facility for a bit without having her constantly reminded that she's not at home.
You may have to resort to a white lie or two about not just being a home during that week, so she doesn't think you've abandoned her. Tell her you're going out of town for a few days with one of your kids, if necessary, or that the house has a plumbing leak. And most important, talk to the people who run her place about the best way to help your wife acclimate. They're the experts at this, and they can guide you as to the best way to help both of you.