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Mom and Dad relocated to KS from Chicago area 7 years ago after 40+ years in the house I grew up in (ages 82 and 81 respectively) I am 57 and have been on my own and happily married to the same man since the age of 20. Their new home is just across the street from me. Dad passed away 2 years ago due to complications of Parkinson's. Mom is now 89 and physically healthy for a woman of her age!


Mom was officially diagnosed with dementia shortly after dad passed (dad saw it all coming) and insists on staying in her home, which thankfully she can afford. We have employed caregivers to come and keep her company and to assist with household tasks/shopping. Mom says she is lonely still and wants to be at my house as soon as caregivers leave for the night. With COIVD this has escalated. Every time I leave my house (I only go grocery shopping or to run errands for my husband who is a self employed construction worker) I get "the call". "Where are you going?" "Will you be sleeping at home tonight?" "If you're doing something fun, I'll come with". We include mom in every outdoor activity with our close friends which occurs almost once a week here at our place. We don't take her shopping or to other's homes.


Let me back up a bit; I traveled for a living up to 6 months per year, until COVID. Mom had a massive heart attack one night 7 months after dad passed. I just happened to be home at the time. One helicopter flight, surgery and 3 nights in the hospital later, she's fine. I totally understand her fears/anxiety, but she was never a call every day/week/or even month kind of mom so as an independent self employed empty nester living so far from my parents for so long, I struggle with this new neediness.


We've made all sorts of suggestions, including overnight caregivers and get the "I don't want a stranger sleeping in my house" answer every time. Remember, she's the one who doesn't want to live in a nursing home or assisted living. She doesn't seem to want to even try to engage with caregivers. She only wants me and my husband to fill her loneliness. God heal my selfishness!


I will eventually go back to traveling and my husband has already been down this road with his mother who passed the same year as Dad and I don't want the burden him with the added stress once I start traveling again. What can I do once I'm gone for weeks at a time? Siblings live in CA and OH and both have jobs they cannot just walk away from to come stay with Mom while I do my job. If I could afford to stay home, I would. I'm sure we'll need to increase caregiver hours from just 4 hours a day to possibly 8 but will that really satisfy her needs?


Meanwhile what are some suggestions/insights to deal with my new role and how to kindly tell mom that we need at least some evenings to ourselves for our own personal and marital preservation?


I know that I need more understanding and compassion for her situation. As someone who's been self-employed in sales for almost 20 years my superpower is being the health advocate/coordinator, not the nurse.....help?

Just because your mother doesn't WANT to go to assisted living, doesn't mean she doesn't NEED to go to assisted living. This the biggest trap I see people falling into....wanting to make every want/need of a parent a reality. It is not feasible or reasonable.
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Reply to lkdrymom
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To start, what you said about "God heal my selfishness' is not fair to YOU. Your mother has dementia, first of all, and SHE is the one who is entirely too needy here, not you. Expecting you to satisfy her 'loneliness' by being available to her 24/7 is unrealistic and impossible to boot.

You can't focus on your mother's 'wants' now but on her 'needs'. We all 'want' things, like to win the lottery. To stay in our own homes until we perish, too, regardless of whether that's a realistic idea or not. With dementia, it's likely an unrealistic idea your mother has put into her head, along with the idea that it's your job to entertain her day & night. And, with dementia, once they get an idea stuck in their head's, unfortunately, you can't get it out of there with a chisel. It's the nature OF dementia; stubborn pigheadedness and the inability to understand much of anything anymore. Sad but true.

So........this is going to become about what your mother Needs vs. what she Wants and how you are going to go about making sure she's properly taken care of. You can do that by hiring in-home help 24/7, when the time comes, IF she can afford that, or, by placing her in a Memory Care Assisted Living residence where care and help is available 24/7 at a less expensive rate.

She doesn't have to 'love' the caregivers that come in to help her, she just has to accept their help.

You have to tell your mom, repeatedly, that you are Not Available after 5 pm (or whatever time you determine) because you have other family obligations that need to be met. Period. No further explanations. With dementia, again, you are likely going to have to repeat this same phrase every single day for the rest of her life. No joke. Be strong, be adamant and be FIRM. Dementia or no dementia, they look for cracks to sneak in through and say AHA! I KNEW she didn't really mean it!!!! Then the gig is up.

You can have understanding & compassion for your mother's situation in ADDITION to preserving your own marriage, lifestyle, and job. This is a no-win situation, trust me, I know. Everyone loses. You lose, your husband loses, your mom loses. Dementia destroys everything it comes into contact with. It can get very ugly and very demanding and very unreasonable too.

I know from where I speak b/c my soon to be 94 y/o mother has moderate dementia & lives in a Memory Care Assisted Living home 4 miles away. She tells me daily that there is Nothing Wrong With Me & Everyone Here Knows It. She has no idea why she's living there, and on and on. Meanwhile, she has no idea what day it is or what's going on in general. She just knows how to complain and vehemently argue every single word I say to her. Like I said, everyone loses with dementia.

So have your ducks lined up. Have a Plan B in place for if/when things go downhill fast & the in home help isn't sufficient. It sometimes works out that way. Read up on dementia and watch Teepa Snow videos on YouTube. They're very helpful. Go to Alzheimers.org to see what you can expect in the future, and what the stages of dementia are. Go from there.

Wishing you the best of luck moving forward & preserving your own health & sanity in the process.
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Reply to lealonnie1
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It is not you who is lacking here, my dear.

Your mother's brain is broken and she needs more constant attention than just daytime aides can give.

Find a good Asssited Living Community, one that also has Memory Care for when mom progresses. Get mom on the wait list.

When the vaccine comes on line, get mom in there for a month of respite. I can almost guarantee you that she will thrive there.
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Reply to BarbBrooklyn
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I think it is looking like Mom is coming to the place where she must have 24/7 care. I don't know assets, but that will be enormously expensive. I understand she doesn't want to leave her home, but this is going to become more and more impossible from what you are telling us. You will be unable to set limits because she is more and more going to be unable to set limits, so discussion of boundaries will not work. I think, sadly that you are looking at a need for your Mom to be in care. Not everything in this whole aging thing can be fixed. Not everything can be what we "want". Not everything can be without loss and mourning. In fact, end of life is ALL ABOUT loss after loss after loss, and that's the hard truth.
You are thinking this all out just great. You have and can enumerate all the things, and you understand them. Putting them together is leading eventually to one conclusion I think.
You will find some on Forum who thing that your life should now be, in your Mom's remaining years, taking her into your home and devoting yourself to her remaining years. You will find some on Forum who believe that this is not only NOT the best answer for some of us, but that we are not CAPABLE of making that sacrifice (count me into that line).
Only you can make the decisions going forward. You can try to limit your Mother in her expectations and needs; I suspect, even if that works for a while, it will not over time.
You have tried to do this so RIGHT, with Mom just across the street. My heart goes out to you. But I do trust you will make your own decision, no matter the difficulty involved....the decision that is best (if not perfect) for you.
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Reply to AlvaDeer
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With dementia you have to remember that they don't remember. They are afraid and usually don't like to be alone. I have this with my mom and I'm in the same situation as you except I actually lived with my mom for two weeks until I was able to get 24/7 care for her in her home. I have no regrets for what I did but it is sometime physically impossible for one person to take care of a dementia patient. You need a mental break. In the past 3 months I had 3 aids leave my mom, she is never happy and when she spends the day with me guess what she's not happy she wants to go home to her own house then when I bring her home she wants to go to my house. The thing is I don't think they know what they want their minds don't work the same. You can have a nice conversation with your mom but if she is like mine she will forget what you said 5 mins ago. I no longer feel guilty, I do my best and when my best is not good enough for her I say I'm sorry that's the best I can do. When I go to visit her and she is abusive I walk out. I truly feel she will end up in MC facility so while she still knows who I am.. I visit her but keep the boundaries because they can overwhelm you. Also I thought my mom was lying to me a lot but I keep this in the back of my head ... It's not a lie if you believe it. Example.. Aid stole my eye glasses... no you hid them in your room than forgot you did that and now you can't find them and blame the strange person in the house for stealing them. They were found in her bedroom draw and she said she didn't put them there ( because she don't remember doing it) so in her eyes she's not fibbing. Also another thing I learned.. as kids we are used to listening to our parents but now it comes a time that we are the parents and elderly are like the kids. I find writing notes on a big calendar helps so that she can look forward to doing something.. two things a week works for me because I still work. If that is not good enough for my mom once again I tell her that is the best I can do sorry.
I rambled a lot but I hope I was able to help you.
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Reply to Onlychildbutnot
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I understand where you're coming from. It's not that you need more compassion. It's not about compassion because you have enough for being willing to care for your mother. You were willing and that's not the same as having it just put on you.
Maybe your mother needs to be talked to in a way that she'll understand. She was married for a long time herself, so maybe she'll remember about couples needing some evening to themselves with no one there. If she isn't engaging with her caregivers, try talking to them. It could be that they're not a good fit for her. Then make yourself clear, that you cannot and won't be responsible for giving her a social life. If she's still in good health get her involved with the senior center in your area or even adult day care a few times a week. Then be insistent on an overnight caregiver if she's afraid to stay alone. I know it sounds harsh, but there has to be boundaries.
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Reply to BurntCaregiver
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Dear Megdog, as you are new on the site, I’ll write out some things that are fairly common here. First, have a look at the many articles, old questions and discussions, on the site. You find them by clicking on Care Topics on the top right of the screen, then on any topic that seems relevant – for example A for Adult Day Care. Surprisingly, there is no topic for Boundaries, but you can search for it in the magnifying glass.

You have already heard that Assisted Living might be ideal for your mother right now. In the early stages of dementia, she can still adjust, make friends, take up the activities provided, and actually enjoy life. Perhaps you could ring around and see if any facilities near you can provide a short term respite care option, and try that (I’m sure you can find a good reason why it’s absolutely necessary for a month). Perhaps a facility might not offer it as a regular option, but might use it as a fill-in when there is a vacancy. Anything that provides something that doesn’t have to be in her home on her terms, could change the head set of both you and her.

Many people have found that what they intended to be supporting a parent’s independence, was in fact supporting their dependence. They couldn’t be ‘independent’ without the support, but still saw themselves as independent. At the same time, they got more and more demanding, and less and less willing to try other options. There are also many discussions about ‘enabling’ versus ‘disabling’, which is another trap in doing more and more while they do less and less. “Kindly telling her that you need at least some evenings to yourselves” is going to be a difficult boundary to broach and to enforce, and it isn’t going to resolve the basic issues.

It’s a very good idea to read around the issue and think of alternatives, before you commit yourselves to turning your own lives upside down.

Best wishes, Margaret
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Reply to MargaretMcKen
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I can tell you from personal experience with my wifes Mother that you need to be clear and consistent. You are already giving into her by taking her to your social events with you. This neediness will worsen with age. If you give in to her your risk is that she lives a long time and your doing this with her for that whole time. She will go from I want to come over after the caregiver leaves to I do not want to go home at all.
You have to be disiplined about this the minute you start giving in she has got you!
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Reply to lacyisland
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It’s obvious she doesn’t have enough interests to occupy her time and we humans are social creatures. So it sounds like two things...loneliness and boredom.
Would it be possible for her to have a pet? Not only does it help with loneliness but studies show it helps with our health.
once Covid is in the rear view mirror and you travel again, she would be able to go to a senior center to see folks and have activities, go to church or temple, etc.
You do not need to be her whole social world and do not feel guilty that you recognize that. As people age, their world narrows and gets smaller and this pandemic has made this even more so.
When she begins to need more care to the point it requires 24/7 that will be exorbitant. Much more than Assisted living or even LTC.
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Reply to Harpcat
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I can relate to your Mom. Life without your partner is hell, even if she does have dementia. I do not have that despicable disease, but my husband had it, and I was his caregiver during it all. As he was nearing the 10 year mark I knew what was going to happen, so I accepted my son's suggestion and sold our home in a senior park and I moved to where my son is. Only 15 minutes away from me. I live in an apartment alone, as I said, no dementia, but some other illnesses. There are some times I don't hear from son in 2 weeks, once it was more. Yes, they are working from home, yes, the kids are being schooled at home due to pandemic, but just one phone call a week at least would make the lonely days go much faster and not be so boring. Especially during this pandemic when friends aren't social anymore. Physical visits are maybe once a month. 29 days a month of no contact with anyone is so long, like 6 months. If he called every day it may be a bit much, but after 2 weeks I go crazy with no contact with anyone. I'm over 80, so not as mobile as I'd like to be and I just had a surgery that kept me homebound for weeks, with no driving; still no calls on how I'm doing. OK, I did have caregivers but not more than a few hours a day, and they aren't family. Finally, he called and asked how I'm doing. After almost 3 weeks. Yes, I know it's hard to work at home and help kids on computer schooling, but just a call....
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Reply to JoAnne80
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ExhaustedPiper Dec 7, 2020
JoAnne,

I'm sorry about your husband. The pandemic has made things extra hard this year and it's affecting everyone. It's possible your son is very distracted with his own challenges.

The bigger picture is you are bored living alone. Out of curiosity does your apartment complex normally have activities for seniors? Senior living complexes seem to be the best places to prevent isolation and foster new relationships. If your current place is not like this, maybe a move would be good for you?

Also have you applied with your local Area on Aging Agency? You can sign up for all kinds of things that would bring people around and open up opportunities for socialization.

I realize that we are still having this pandemic, but a vaccine seems to be on the horizon so hopefully some normalcy will resume and then you can explore some options for increased socialization.
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