How to explain to your spouse how important your loved one with dementia is to you?
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.
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Are you a good enough manager of your time to take on these added responsibilities for these ladies and not cause your husband to feel neglected? Does your husband still work or have hobbies that will give him something to occupy his time?
Just as an aside, her facility sent my mother to the ER for what I thought was no good reason a few times as well. It’s just their rules. They need to make sure all is well with their residents to cover their own behinds, so to speak.
You have some serious thinking to do and some choices to make. You are going into this knowing your husband doesn’t approve. Can you deal with the consequences of him possibly walking out if he feels you’ve put your loyalties elsewhere?
If the move means you would have better oversight and spend less mental energy worrying then that is a plus, but I imagine your husband fears the opposite would happen because removing her from her familiar place and friends will make you her sole support. Are you sure this is in her best interests?
This is a common story here and in some cases actually leads to divorce.
Where are your aunt's children?
From point forward most likely your happy home will no longer exist. I am one of those who feel that your husband and children come first everyone else drops behind them.
Just my thoughts, good luck!
he is certainly right to believe that he should be the most important person in your life.
if you spend some time reading here, you will learn that these situations (meaning with family member moving to be close) usually end with the time demand escalating to the point of a second full time job. I suspect your husband knows this already.
if you bring your aunt to you against your husbands wishes, you will demonstrate to him where he is on your scale of importance....think hard about this. Are you OK with doing irreparable harm to your marriage?
AL's without a continuum of care have no choice but to send them to ER. My dad went like 4 times in the short time he was at AL.
Are you her responsible party? I'm assuming so because they called you? It would be rough to oversee her care from a distance. If she has a lot of friends and connections where she is, moving her may not be a good idea. But we all know that most of the time as someone ages, friends fall away. If you are not her responsible party, trying to move her would and should be impossible.
Try not to blame your husband for being extremely wary of the situation. If your mother is moving that close to you, your time is already being parceled and he knows it.
Would moving her be better for you? or her? What about your commitment to your happy home and your partner? I urge you to talk to your husband and learn about his resistance, don't guess. Taking care of people is hard in so many ways. Having a supportive partner makes all the difference. But not everyone wants to go there. (We couldn't move my mom to my brother's area because his wife just couldn't handle the prospect of her life changing too much.)best wishes
You say she is to move closer. In what manner? Into a nearby assisted living? Have you sat with your husband who is likely now terrified you intend to move an elder (any elder, no matter how loved) into your house? Can you reassure him that you intention is to find housing for her in Assisted living, and would he help you look at some options?
I think you are in a place where you need first to get together a good plan:
Visit your aunt first of all. See what her assets are; see if she would wish to move to an assisted living nearer to you, if that can be easily arranged (nothing is easy in these moves, trust me). Are you her POA. Would you want to be? for Health care and financial. After you see what her wishes are return to your husband.
Reassure him that your Aunt will NEVER be moving into your household. Tell him your plans. Ask his input. This is not something to do without discussion, thinking, planning, and taking time to do it.
And be assured, the assisted living did the right thing.
Ask your mother if she wants your aunt to move in with her at the retirement village.
Does your aunt even want to move? California versus Montana? Big switch. If it ain’t broke, don’t fix it! She hasn’t asked to move near you.
Suppose Aunt had been in a facility near you. What would you have done differently that would not have taken MORE of your time than these phone calls did? Would you have been confident diagnosing rosacea (is this a chronic problem for her, by the way?)?
Your mother's moving nearby. You're deeply involved in aunt's care. Moving her closer to you would make you no less deeply involved, only doing more hands-on work.
What are you doing about boundaries? - because your husband is important to you too, and so should you be important to yourself. It's loving and reasonable and manageable to give time to people you care about whether or not they are formally your responsibility, but where's the limit? I can see what's worrying him.
I'd be realistic about caring for two seniors, one who has dementia. As the only available family member, it will fall onto you. Even if she is in a long term care facility, a lot is involved in the care and oversight. Often, multiple trips to the ER in the middle of the night, decisions about medication, meetings to discuss progression and other issues, financial matters, etc. The stress and responsibility can swallow you up. I'd try to be realistic about it. I suspect your DH knows this and that's why he is apprehensive. I've assumed that role for a family member, a cousin, who is more like an aunt to me and I am terrified that I would have to do it again. It truly changes your life.
If she was at an AL in your home town in Montana, what do you think would have happened differently? The AL called and the same scenario played out? Or the AL called, you dropped everything, drove down there, talked to the nurses, Aunt stayed put, next shift came on, her face was still red and she was sent to the hospital, but in this scenario, you are call and told to meet her there.
There are a great many people who do not have family close by and live in AL.
I know I for one would not agree to moving 1000 miles give or take to a very different community, different weather, terrain etc, especially if I was receiving care where I was.
Maybe I didn't explain as well as I should have. So here's a little more background.
My Aunt has been in the ALF for almost 3 months now. It's a beautiful place, however, I have had an extremely hard time getting the staff to answer my questions. I leave messages and no one calls me back. I talk to the executive director and he tells me he'll get the answers. He doesn't call me back.
As for the trip to the ER, I received a call in the afternoon that my Aunts face was red. BP was fine, pulse fine, no fever and she felt fine. With 20 years of medical background under my belt, I asked them to monitor and call me if there was any change. They didn't call me until she was going to the ER by ambulance. A $200.00 ambulance bill will be coming soon. Yes, I if she was here in my town I would go check out the situation. But at least I could go home and not worry instead of waiting for a call from an ER Doctor.
Yes the move maybe tough on her. Honestly her memory is like swiss cheese. Making decisions is not anything she is capable of anymore.
So it's a matter of flying to California every time there is a major issue or driving 20 minutes!
20 minutes seems more reasonable to me.
In my mother's ALF, they would never send her to the hospital w/o calling me first. I have to give the ok for them to call an ambulance unless it's a life or death situation, obviously. A red face does not constitute a life or death situation, so I can see where you'd be annoyed at such an over-reaction. If you can get a few things straightened out over the phone with the ALF, perhaps you can keep your Aunt where she is and keep everybody happy.
If not and you move her closer to you, then you'd need to sit down with DH and make up a list of rules. You will visit X amount of days per week or month, X amount of phone time will be spent, etc. What he's seeing is you spending 24/7 with them and leaving 0 time for him. Not to mention, does your Aunt WANT to move? I like the suggestion of asking her if she'd like to move with your mom to the retirement village, if such a thing is possible and/or feasible.
I don't think it's a matter of 'choosing between your husband and your loved ones in care' but a matter of coming up with a PLAN of how to handle the care which obviously falls to you no matter WHAT. Sit down with DH and talk it out and reach a mutually agreeable solution.
Good luck. It's a lot to deal with, I know. Wishing you all the best!
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.
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!
Make your spouse your partner in these endeavors. It’s his life too.
Your aunt is lucky to have you and you are a blessing to her, I am sure.
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.
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!
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!
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.
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.
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.
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.
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...
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?
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!