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.
Old Sailor lost his wife but he pops up every once in a while. We have had a few men who take care of wives and mothers.
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.
Thank God for those rare moments of which we never know will occur again...
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.
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.
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.
There may be a support group near you for spouses dealing with this. I'm sure there's a lot of online meetings now too, so even if there is no group locally, there's ways to get help. The staff at your wife's facility probably know some places to start. It helps so much to talk with people who know exactly how you feel.
Thanks for your concern.
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.
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.
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...
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.
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
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.
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.
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!
Your dedication to her and courage to make the hard, but correct, decisions is commendable.
Stay strong.
LonelyDespair
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.
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.
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!
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!
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
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.
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.