How to explain to your spouse how important your loved one with dementia is to you?

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How to explain to your spouse how important your loved one with dementia is to you?

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After having traveled from Montana to California for a visit with my Aunt and her friends last weekend. Kind of an intervention if you will. Using a visual aide to help, her constant phone calls have decreased dramatically! Great news!
However, I got a phone call from assisted living facility this afternoon that my Aunt's face was red and hot. She had no fever, blood pressure was fine and she felt fine. Having a medical background, I told them just monitor and call me if there was any change. Shortly after the shift change, I got another call that they had sent my Aunt via ambulance to the ER. Turns out it was nothing more than Rosacea! (I'm totally pissed). This just solidifies in my mind the fact that I need to move my Aunt here to Montana. My husband seems so resistant to the idea.
This woman has been so incredibly important to me! I thought he knew this. How do I maintain my happy home and maintain caretaking duties for my Aunt? Oh , as well as my mother that is moving into a retirement village near us in 2 weeks. I guess I just need some positive feedback.

Alzheimer's & Dementia Care Decisions Family Caregiver Relationships

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xray,

That could be interesting if your aunt put your mom in her place. Hahaha
Nothing like a taste of her own medicine, right?

Your mom sounds like my husband’s grandma was. Oh my gosh, in public butter would melt in her mouth. Just as sweet as pie! People would comment how lovely she was. Oh, if they only knew. I didn’t tell.

I did not want to give her antics any credence and I felt out of respect for my husband it wasn’t my place to say anything. Behind closed doors she was a witch!

Besides, every family has their crazies!

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Right??
I know my brothers understand to a point. So difficult to be the "target" of a narcissistic loved one.
Thanks!

(1)

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If your mom is as hard to get along with as you have described her in your other question, how do you think your aunt will be affected by having to live near her?

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That's a really good question.
It seems as though my mother is hardest on me. She seems to put on a facade for other people. I have learned that this is not uncommon with narcissistic.
Ironically, I think my Aunt has lost some of her inhibitions with her dementia. She may actually put my mom in her place if mom steps on her toes. Lol

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I asked a few days ago ‘about the balance of time at home and visiting your mother now? If you are spending hours every day with mother, DH’s concerns are quite reasonable’ about adding your aunt into the picture. So far almost all the posts have been about DH’s behaviour, not yours. Could you give a bit more information about what you do yourself? It might get more helpful responses.

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Sure Margaret,
Glad to. I think some of what I said was taken by some out of context.
My hubby was amazing while I was in California for 6 weeks. I thought I was just going for my Uncles funeral. Long story short, after getting a restraining order against my cousin on behalf of my Aunt, finding her an ALF and selling her home I was able to finally come home. Since being home I have had CONSTANT issues with the AFL not communicating with me. I have not been unreasonable. Too many issues to state! Just an example, they requested I ask her Doctor for an increase of her Seroquel. I requested from her Kaiser Dr. After 3 weeks I discovered that nothing has happened from the AFL side. They told me they need a signed order from the Dr. Dr tells me AFL needs to request it from him. I am a thousand miles away and can't do a darn thing about it! This is just one example, besides the ambulance ride to the ER for a rash on her face that I had asked them to monitor and call me if any changes. They didn't call me until after she was on her way to the hospital.
All these things cause me stress!
Not because I am a control freak, rather because I love this little woman more than words can say.
I think my husband is tired of seeing me stressed, but with my mother arriving tomorrow, I can't just turn it off! I absolutely take good care of him. He is a spoiled man! However, my new reality now involves these two women.
Wouldn't it be better to have both women in the same place so I only have to deal with one facility? Not have to travel to California for "serious " issues.
Yes, my husband comes first, I just need him to understand that short of letting my Aunt become a ward of the state, I have no choice!
My ultimate plan is to visit my mom once a week. Do her shopping and visit for a while. Holidays etc.. that's it. If my Aunt is here , that's 2 birds with one stone!
Thanks for your question!

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Your husband knows how important your aunt is; he’s more concerned for YOU. After all, it’s not just your aunt, it’s your mom, too. Yes, the situation now is stressful what with aunt being so far away. It will be just as stressful when you move her close by. Admitting that to yourself will be a big step. Then brainstorm with husband on how to reduce that stress so you don’t end up burning yourself out & going before either one of them. Meanwhile, do you have any local caregiver support groups you could attend? I found that, and this forum, to be extremely helpful.

Good luck & sending you hugs.

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On your recommendation, I found one! Meets every 1st and 3rd Friday! Thanks

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There is no need to fly out there every time there is an issue. If you move your aunt closer are you planning on running to the facility ever time she has a hiccup? You may end up spending more time with her being closer than far away. I think your husband may realize this.

my father is in AL 30 minutes away. They call for everything. That does not mean I go running there at 3 am. For the longest time he found an excuse to go to the ER on a weekly basis. I did not leave work or lose sleep running there. I can manage everything from the phone. When I do visit him it is on my schedule and works into my life.

No one is saying not to help your aunt. They are saying that you need to consider your husband’s concerns.

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I have strong feelings about this topic because my then husband decided to become his parents' caregiver and he then neglected me and our marriage and our children. It was his "right" to decide to become his parents' caregiver; it also was my "right" to end the marriage when it no longer was tolerable for me to be at the bottom of his priorities.

So, here's what I suggest. Instead of trying to explain to your husband how important your aunt with dementia is to you, explain to your husband how important HE is to you. Tell him what you will do to keep him highest among your priorities. Ask for his input with resolving the caregiving issues instead of presenting only one option (moving aunt nearby). Acknowledge the validity of his concerns about the possible effect on you, him, and the marriage of having both your mom and your aunt living so close to you.

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My question is does your aunt wish to move? Would she be agreeable if she moved closer to you? Would she be miserable? Would it make things more complicated or easier if she moved closer? I am not trying to harass you, only inquiring.

Would she be leaving friends behind? Would she lose anything else important to her?

How would your relationship with your husband change? Would he come around to your choice or would he feel as if he was overruled?

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My Aunt has dementia. Unfortunately she can't even decide on a pair of shoes let alone moving.
Yes, she has friends. Friends that are just as old as she is.
How long before her friends (already complaining) are unable or unwilling to help!
As her caregiver, I feel like I should see her at least once every 3 months. This expense comes out of her estate money. It adds up.
Wouldn't it be better for me to deal with her and now my mother from one location?

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Sounds like you have some control issues.

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Is it control or love?

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Sorry but husband comes before aunt.

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He absolutely comes first, however, it's hard on him when I have to leave him to go take care of my Aunts buisness and medical issues. Wouldn't it be better if I could take care of everything from home?
It's not like you can just dump someone in an ALF and nothing more needs to be done!

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Sometimes, by showing a spouse how important another loved one is to you, you also show the spouse that he or she is less important than the other loved one. You can make the choice to bring your aunt to live closer by; your husband can then make the choice whether he's okay with whatever happens after that. He might decide that you have created a regret that he has to live with later on.

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Would it be better for me to have to fly or drive to California every time there is a serious issue?
Again, I am having serious problems with the ALF not answering my questions. This causes me stress even though my Aunt is over a thousand miles away.
I guess I don't understand how I am supposed to be a good steward of her money and medical care if I need to reimburse myself every time I have to fly to take care of her business.

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You just tell him flat out - she has been an important part of my life, I am not comfortable with her so far away, she will still be at a facility - but close by for me to see in person.....and then you start the process. If you were asking to put her in your home, then you need his agreement. Moving her nearby does not qualify as a 'needing his permission' to make a move.

Don't allow a spouse, or anyone, to create a regret that YOU have to live with later on.

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OP isn't asking his permission. She expressed surprise that he is resistant to the plan. She is amazed that he didn't understand how important this aunt is to her. The fact that his mil is moving nearby at roughly the same time may have pushed him over the edge.

I think he's probably dreading the difficult and time/energy consuming process of moving the aunt (I would be!) and the likelihood that his wife will now spend ever-increasing amounts of time and energy on aunt as well as mom. What will she have left for their marriage and family?

I think it's a lovely thing to do, but I totally get why her husband isn't thrilled with the idea.

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Ddoes the retirement village where your mother is moving have assisted living? If so ,moving her into the same place as your mother would consolidate your visits. However, before you decide to move her, are you her DPOA? Is she able to participate in the d3cision making process and if she is, is she in agreement to move? Perhaps your husband isn't understanding how this all will play out in terms of the impact on your relationship. He may fear that you will be totally consumed by caregiving. I think It's important for you to discuss it with him and set ground rules balancing your relationship with him versus your need to be a caregiver for them. I hope that if you can work out the mechanics of all this, you and everyone else can be happy.

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Me, I just tell my husband this is MY MOTHER! He NEVER had to go through any of this with his Mother as she died within a few months after diagnosis of liver cancer.

Yes, he gets upset with me when I remind him, but I don't care. Say what you want, but it will not change any thing.

He'll take a drive, go upstairs, not talk with me for hours. I don't care. This is MY MOTHER and I have a job to do for her.

1. By Court appointment
2. Being my Mom
3. I promised her when I was in the 4th grade
4. I have to answer to my grandparents and great-grandparents
5. I HAVE TO ANSWER TO GOD

His jealously and hissy fits are done and over either later that day or the next. He knows the pressure(s) I'm under and for the last 2 yrs as I'm in the process of getting an ASSET DIVORCE for Mom so Stepfather's spawn can't touch Mom's sole/separate assets AND THEY OWE MOM JUST UNDER $100.000 as well as his #1 has committed Federal/State/Bank fraud.
Those are my aces in my pockets so she has a choice, pay or go to prison!

Don't mess with a former banker who can follow the money and knows how to research regarding other issues.

My attorney has told other attorneys when I've been present, I am the most prepared client she has ever had. I have about 5 4" binders and a few smaller filled with research regarding EVERY SINGLE ISSUE. I'm not afraid to tell my attorney she's wrong or #1's attorney via mine, she's wrong.

Stand up, shoulders back and tell your husband where you stand! He needs to deal with it. YOUR LOVED ONE IS NOW AT THE HEAD OF THE LINE.

I got this gene from my Mother! Go for it!

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Wow. An aunt never should be at the front of the line. Spouse always comes first.

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There are a lot of tired people here, and it's understandable. I moved in with my mother who has dementia 4 years ago and, yes, one wishes for a holiday. But I also notice that experiences with dementia are very different. Not everyone turns nasty. My mother is actually nicer since all worries have been taken off her. I also remember a teacher of mine (once upon a time) who said that his wife being OK with him taking his late mother at home had given strength to the couple. He was very grateful. It's essential. People who have problems often aren't. They think their spouse should understand and take it for granted (they can even resent their spouse for making them feel guilty of caregiving). What I mean is : there is no story like another, and you're the only one who knows how you'll be able to manage the situation, and if the relationship with your husband is at risk or, who knows, could be enhanced.

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AL facilities are not set up to handle urgent medical problems. Calling the ambulance and sending her to the ER is their way of Covering Their Assets. Try to separate your reaction to the facility's decision from what your Aunt really needs right now. To live closer to you in Montana she would also be separated from her friends in California.

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Bigsister7,
Trust me, I understand that the ALF is obligated to take care of urgent issues, however, I had spoken with the med tech earlier in the day. Again, red face, BP, pulse , temp fine. My Aunt even told them she felt great. I asked them to monitor and call me if there was any change. I didn't get a call until after she was in the ambulance on her way to the ER.
If I can't rely on them to respect my wishes, how can I rely on them at all? They don't answer my questions. They don't call me back. My patients and nerves are done!

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Your Aunt has friends where she is. Your need to be controlling where she lives is not healthy.

You must decide between your need to control your Aunt and your love for your spouse. I think you're over-reacting concerning an ER visit that turned out to be Rosacea.

Instead of being pissed, why aren't you relieved it was nothing?

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Sounds like you've already made up your mind about moving your Aunt and want your husband to line up with your thinking (against HIS better judgement). Don't mean to sound harsh, just realistic - but don't be shocked if you follow through with your plans and hubby walks out because he sees you haven't put him first in your life. Resentment is a bitter pill.

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Do your research first before talking to family. What would it take to move Auntie - financially and time? Where would she live and how will that be financed? What would change and what would stay the dame if she was to move closer?

Usually when a spouse has problems with caretaking, it is because they are feeling less loved and cared for. Talk with your spouse about how moving Auntie would free up time and finances to care for the spouse more: less travel out of state, no need for hotels, better care of Auntie = more peace of mind for you -> more focus on loving your spouse...

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I have a concern about your aunt's son, your cousin. Is there any chance he could follow her to your area? I only know what you've written about him, and I hope him following her and causing problems for you and your husband is not a possibility.

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There a a couple of extra things to consider. First, Aunt's finances. If she's in any social welfare programs, when she moves, those safety nets fall away. Does she have enough money to pay her own way for living expenses (rent, clothes, food) for the next year? If not, then it might be more useful to hire a care manager for her to be the point of contact for these situations you're being called about. If she passes that test, would your husband and mother be ok with her moving to the AL where your mom will live? It could be more efficient for both to be at the same location so both get visits when you are in one place. It could also mean taking the two ladies to different doctors daily during critical times and your husband might have to help. If he's not ok with that, then what will you do? Again, you'll be calling for the ER.

I also want to express my concern that you think you will be adding to her life happiness by including her in your family events. I know I held those sweet thoughts for awhile, but as it turns out, the best thing -the *only* thing- that made a difference for mthr was being in a safe place. The rest of the benefits were such small improvements that they just did not matter, and in her dementia were more troublesome than positive. Since your aunt was abused by her son, the most important thing has already been accomplished - her safety. You don't have to go out at all and her life is bajillions better than it was. You will be disappointed by your aunt's reaction to your including her in the family because she has dementia and because she has been abused and her reactions are skewed by that as well. Your Aunt is really fine where she is, and moving her is a preference that you and your husband need to work out and agree.

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You do not say you are moving your Aunt in with you...
Are mom and your aunt able to live in the same community? That might be easier on you as far as time goes.
I think your husband is afraid that you will spend all your time caring for mom and your aunt and he will not have any of your time.

I mentioned a "funny" story in one of my answers a while back about when I put my Husband in a Memory Care facility for respite. I was leaving for a vacation, first one in about 8 years. I was going out of the country and I had listed my Sister as an emergency contact as well as his daughter. I get an "urgent" call at the hotel that my Brother in Law was trying to reach me. I contacted him and he tells me that the facility called him, my Husband had an infection and could they treat it. I told him to tell them to do what they needed to do and to keep me posted. Never heard anything more, I figured my BIL, Sister were taking care of everything. I return and get the bill for the "emergency", the doctor, and the medication...The emergency infection was ATHLETE'S FOOT!!! So I get your Rosacea story and understand how upsetting it can be but the result might have been the same even if she had been 20 minutes from you.

Just keep in mind your priority.
Husband first (and children if any) then Mom and Aunt.

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Is there any way you could move your aunt to the same facility as your mother, ideally one with continuum of care? Even if it takes a few months to organise? A visit to both of them won’t be double the time you are currently committed to visiting mother (and few people don’t visit their mother). Other things like contacts with the staff and traveling time would also take less time. And they could be instant company for each other.

My own experience with MIL is that unless most of the residents are still fairly ‘with it’, the interaction for each resident is mostly with the staff rather than with each other or with the occasional elderly visiting friend. Staying in their original home community becomes less and less useful, as old friends die or become unable to visit. Perhaps talking this through with DH might lead to some new options to consider. Importantly, are you clear about the balance of time at home and visiting your mother now? If you are spending hours every day with mother, DH’s concerns are quite reasonable. If DH resents any time with mother, you have a much worse problem.

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So if the OP doesn't agree with your point of view or take the action you recommend, it's okay to bash her? Neither appropriate nor supportive! Even when someone asks for advice, he/she has the right to take it or leave it for his/her life. Her life, her choice.

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Sounds like your mind is made up. You will choose your aunt and mother at the expense of your husband. No other way to put it.

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Thank you all for your responses.
Very diverse and much appreciated. I had an epiphany this evening. I shared it with my hubby. I think he understands.
It occurred to me that my Aunt has been the the strong one of her family for years. It's been over the last 5 years that her dementia has become apparent. My Uncle, God bless him, was ill and simply couldn't deal with their abusive , mentally ill son along with my Aunts dementia. So he gave up!
Over the last 15 plus years my Aunt and Uncle were basically held hostage by their own son.
Not anymore!!
If I move her closer to me, I could do things for her that I'm sure she hasn't had in many years! Birthday celebrations, wonderful Christmasses, and much more.
Maybe make the last years of her life better than the last decade.
The move maybe tough, but I think overall it would be worth it!
She deserves it!

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I remember prior to my mother's move close to me (next door) I had this surge of optimism that things would be "easier" if she was close. I too was sick of long distance travel and plane rides.

I did not know about the dementia, but I knew her health was more frail and she was requesting the move so I made it happen and she too left her few friends behind. They too were getting "tired" but I didn't really grasp why. I had visions that my life wouldn't drastically change, and the interruptions would be minimal and my mom would still function and socialize independently.

That was in the Spring of 2018.

Let me tell you, now I FULLY understand why my mom's friends were "tired" and that optimism I once felt for a short period is so far out the window it's not even funny. I have crippling depression, I'm constantly overwhelmed and my mom pretty much hates it here so it's not like I even succeeded in making her happy.

Please don't underestimate what you are about to do. This epiphany that you had about giving your aunt these wonderful holidays and celebrations is filled with such good intentions, I see you have a huge and loving heart, but dementia changes everything. That is a cold hard fact.

Do you have to make a decision now? Your aunt is safe right? Can you postpone this until after your mother arrives and you see how that goes for awhile? That in itself is going to be a big change for both you and your husband.

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I am on the other side of this situation. My parents are both gone. They passed at young ages. I love my husband dearly. On that note... MIL has never liked me. She met me once for an hour. She didnt speak to my husband or his children for 5 yrs because of me.. Fast forward now Im her full time care giver for the last 3 yrs. She has dementia and a few other health issues. I gave up my career of 18 yrs to be with her so he didn't have to move her from her home.. I do this because I love him! I also do not get to spend much time with our 10 grandchildren. It was my choice. So hopefully your husband can find it in his heart to let you do what you feel is right for your family. Good luck.

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I agree

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@xrayjodib, the fact that your dh is a "reasonable man" is the best argument for taking his resistance to this idea seriously.

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TXGirl, I absolutely take his resistance seriously. I guess my thought process is that everytime she gets seriously ill, I have to get my backside to San Francisco to make sure she's ok. It's very stressful trying to make sure she's ok from a thousand miles away.
Wouldn't it be easier to have her close by so I could actually see and care for her? Her friends while supportive are getting tired! The ALF doesn't answer my questions. I loose sleep over what's going on. I need some peace, but am between a rock and a hard place.
THanks for your input!

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Not sure if you had the phrase "for better of for worse" in your marriage vows, but if so, this would be when I reminded your husband of this and even if that phrase wasn't in your vows, I'd still remind your husband that he is taking you for better or for worse, just as you have gracefully kept him when things weren't so hunky dory at times having to put up with his a$$!
Your aunt is lucky to have you and you are a blessing to her, I am sure.

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Is "for worse" the goal, here? The OP has the option to make adjustments and keep things the way they are. Her dh has already been understanding about long absences to care for her aunt and moving her mother closer to their home. Remember, she says he is a reasonable man who has been understanding and supportive toward her.

Her aunt is blessed to have someone so loving looking out for her, but a long-distance move may not be best for anyone, least of all the aunt.

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It sounds to me that your aunt is being well cared for. I know you have mentioned before that she has good support from her church and her friends. She’s not going to appreciate the move. Pace yourself.
Make your spouse your partner in these endeavors. It’s his life too.

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Agree with this. A long-distance move is hard on an old person. She will lose everyone but you and will likely be very confused.

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Sometimes men are just not reasonable.

When my parents married, my mother moved into my father's household which included his father and adult sister. Mom cleaned up after her FIL and SIL, and cooked and sewed for them while my father continued to support them for 4 years. Fast forward 40 years and my grandmother needed help with household chores and taking a bath. My mother spent most of the day Tuesday (when Dad was at work) and 3 hours or so on Saturday (when Dad is spending time on his hobbies, including occasionally being out of town). Mom's efforts helping my grandmother took absolutely _nothing_ from my father. Yet he vehemently objected. Early in their marriage, Dad told my mother when she married and took his name she was no longer related to "her" family and she needed to stop visiting them weekly. Dad had paranoid personality disorder, his mother died of cancer when he was 22 just a few months before he married my mother. Dad could share her with his children but he didn't want to share her in any manner with anyone else. She was his emotional lifeline. My mother made every effort to minimize the impact to my father of her care giving for her parents, but she still went and she still provided their care and Dad still fussed about it.

You have already accepted responsibility for your aunt. Moving her closer will make over seeing her care in LTC easier. You may need to accept your husband may always fear your devotion to your mother and aunt threatens your devotion to him. You may need to be able to let him fuss without responding with rancor. But you still need to be yourself too.

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Thanks TNtechie,
That was the most insightful response. I have to admit I was surprised at some of the negativity. My husband is a reasonable man. He understood and supported me when I went to CA for my Uncles funeral and ended staying for 6 weeks. The reality of my Aunts dementia along with her abusive son meant I couldn't just leave her.
I honestly feel like the constant frustration I have due to the lack of communication from the ALF will be greatly reduced. And I can be there and I can take better care of her if she's here near me.
Thanks again!

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How to explain to your spouse how important your loved one with dementia is to you?

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