Is Asking for Help Always Worth It?
I quit my job at my adult children's behest to stay home and care for their father, my husband. We have limited means so our oldest child (son) moved in with us and he gives me money monthly --barely enough to pay my bills. I have no more savings. I am not able to plan for my future. I am 50 & my husband is 80 with an Alzheimer's diagnosis (mini mental 20/30). He could probably be home alone or with minimal help/supervision for a while longer but for a very excitable dog we got before I realized my husband could not handle him. My kids are very generous and supportive, but I've given up so much and now I am feeling their resentment too.
Aside from the long term concerns, I have a more immediate gripe/conundrum: I planned my first ever solo trip for this summer (12 days) & my daughter agreed to stay with her dad and do all the housework that I usually do (minding her dad, shopping, cooking, pet care). I am supposed to leave next month. This week she is visiting and being very argumentative and resentful of the "female role." She gets like this when she does not want to do something. She's been going on about her freedom. To cut it short, I feel like I am asking too much of her and I am thinking of cancelling my trip. I cannot get a refund on the airfare but I can reschedule (maybe up to one year). It's a trip to Europe where I was going to stay with two friends and a few nights in a hotel. I really can't afford it, but I felt so ready to have a little time for myself and life of my own that I went ahead and scheduled the flight since I've been talking about it for years.
My daughter is generally very supportive but when push comes to shove I know she'd rather not do this. She'd rather work and have her time for herself. She works freelance and she turned down one job already to cover me. She wants to help, but she gets overwhelmed. To be fair, the situation is a bit overwhelming for everyone. There's really no option of outside help a this point. If I do cancel, I will say that I just can't afford it now, which is technically true. I was really looking forward to this trip but I am starting to think it's a little excessive.
What do you all think?
Comments
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Dear Victoria2020, I really appreciate your post. It’s the opposite take in some ways to a reply I got on another board which said I can’t ask my children to care for their dad, they need their money, etc. The common thread & what I know to be true is that I need to work & we need outside help. Our abilities are limited. My son lives with us but I end up cooking all his meals because he’s always working. I was happy that he was taking over dog duty but he started to resent that. It’s inconsistent. I can’t ask him for more money. It’s too much. It’s only been two months & I’ve made a mental note that it won’t go past six.
I think daycare for my husband is a great option, tho he won’t think so, & the 800 line is where I’ll start for some more insight. The puppy was the canary in the coal mine b/c we got it at my husband’s urging after our pup of 13 years passed. I was still working & my husband was home with the new pup. He kept letting the dog out unsupervised & we live in rural area with no fencing around the house. It forced me to look at his day to day functioning more honestly. I had been in total denial. With our old dog, he was messing up a lot, too, but I couldn’t understand why. So, the trip is another wake up call. Thanks so much for your reply. It helps!
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I’m wondering if you could hire some help in to do some of the basic chores around the house while you’re gone. Your daughter can oversee the work but won’t have to do it. Maybe some house cleaning and laundry once a week while you’re away? Although it seems your kids should be able to help you this way. Yet, one size does not fit all.
Hope you can get the time away.
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mommyandme I agree that the kids should be able to hold down the fort for 12 days but my son works 10 hours a day and my daughter seems ambivalent. Thanks for your support. I’m on the precipice of cancelling/postponing the trip but I’m also learning a lot from all the different replies & advice. So I’ll keep everyone posted on the final decision.
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My suggestion is to re-home the dog. Members are always asking about getting a new pet for a PWD. I always say "no". The PWD will be totally INCAPABLE of responsibly caring for an animal. They just can't. If there is an adult willing to assume all dog duties including protecting the dog from the PWD's inconsistent and sometimes abusive care , it might work out. But caregivers already complain of being overwhelmed without an animal in the household and additional dog duties.
Another thing: animals are trip hazards. All PWDs walk poorly, have poor balance, and don't see well, and many already have fragile bones. PWDs may love to have a pet, but the family must be realistic as to the additional demands placed on them.
Iris
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Dear Iris,
You are right. The little pup is such a source of delight but also so much work. I will discuss this with the kids; either one of them takes the dog or I put the dog in full time day care when I go back to work. It could come to re-homing, though. I hope not.
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AlzWife2023, I am an AlzWife also. No pets though - I thought about getting a puppy for me last year, but realized pretty soon that I must have been sleep deprived and delirious at the time :).
You are carrying a heavy load and I don't think your kids understand how much you are handling pretty much single-handedly. Unless they want to take care of their dad full time for good, it is important that you take care of yourself with some getaway breaks and fun things that you look forward to. I used to hear that 1/3 of caregivers do not survive their LOs with dementia. I know you are young, but this disease takes its toll on our health too.
I hope you do not cancel your trip. Of the months and years you have already committed, and the months and years ahead...you need and deserve these 12 days to yourself.
The Alz 800# may be able to help you identify free Respite care options. Your husband's insurance should provide you with 30 days per year, I think. And the same for the local (state) senior programs, especially in the case of his age and disability status. You may be able to get them to provide respite care in home, and your daughter would just need to supervise a bit. Or maybe there can be a bed available for your husband for 12-13 days, in a nearby memory care facility.
It took me a long time to find aides that were reliable, and we have tried a few and also one memory care respite week. It worked out fine. I encourage you to keep trying. You are worth it.
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Dear ButterflyWings,
Thank you for your thoughtful response. I’ve posted here and on another board & gotten about 15 replies—all but one very sympathetic, offering good advice. The majority of replies urge me to get my husband into memory care (which we can’t afford) or into LTC via Medicaid & to go back to work. Some suggest in-home help & respite care. It’s very hard to image uprooting him from home and sending him anywhere. It’s really unimaginable at this point. The only scenarios where I can imagine that are if he becomes violent, starts wandering, becomes a real danger to himself, or forgets who I am. So I’m processing all this helpful advice and grateful for it. It’s still hard to imagine.
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I am so sorry for the situation in which you find yourself. I have some thoughts on this, and you probably aren't going to like them. But these are steps others have taken to get through this horrible situation.
Given your age, I am going to assume your children are relatively young adults with little life experience who should be focused on their careers, relationships and future securities. You son should be saving for his own home or retirement. Your daughter should be building her portfolio. What happens if your son decides to get married and move in with a spouse? Of if your daughter does the same and finds herself juggling small children and a career?
As an aside, I do see your daughter's point in the assignment of very stereotypical gender-based work assignments. Your son gets to support the household and she's supposed to step away from her professional life to provide housework and mind dad and the dog. That's a flashback to the 1950s. I would bristle at that, too. The 12-day trip to Europe seems like an awfully big ask; people who do this typically place their LO in a respite facility for the duration.
They probably have little understanding of the consequences of them insisting you retire to be a fulltime care giver. You probably should not have taken their advice. You need to put you first. Dementia has only one outcome and you can't change that.
Rehome the dog. He deserves better than you can provide at the moment. You probably should not have left your job. I would find a new job asap. Not just for your security at the moment, but also as a safety net for your own golden years. You may need to find a day program for your DH to attend if you can't get in-home care. If he is uncooperative around this, then he may need to be placed in a MCF so you can work. I would look in Medicaid planning with a CELA since you've depleted your savings. You might explore downsizing if your home is too much for you to manage in terms of upkeep and cost.
HB
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I think your offspring are in their 20s or very early 30s since you are 50. Most people of that age don’t really understand dementia. Because of the large age gap between them and their father, they may not really have a close relationship with him either. They are trying to establish themselves in their careers. I’m not sure how much more money your son can give you if he is giving you so much that you can almost pay all your bills with it- what does that leave him to pay his own bills?
You also need to be working and earning money for now and increasing your retirement income sources ( social security, pension etc). The 50s are supposed to be your prime earning time. Otherwise your children will be taking care of you for the rest of your life and resenting it.
Your spouse can live for several more years unless his physical health fails. Every year will require more care. You really need to visit an elder care attorney and discuss your financial future. He can explain Medicaid and community spouse laws to you so that you understand what you would need to pay if your spouse goes into a group care setting later.
I’m not going to tell you not to take your trip. I’m going to tell you to rehome the dog immediately. If your spouse can still stay home during the day by himself, then your son can handle him at night and do the chores you think your daughter should come and do. She can come for a few days over the weekends and therefore not give up two weeks pay. Housecleaning can slide until you get back Then you should start looking for a job.
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This is so sad. Are your daughter and son capable of dividing up the responsibilities for 12 days?
How about... your son agrees to walk the dog on a leash a few times a day, and take dad out for a ride on weekends so your daughter can get a break? Do they get along with each other? This should be do able. Maybe you need to call a meeting and get some cooperation.
Good Luck, I hope you get to go on your dream trip,
Maureen
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I want to THANK YOU ALL for your very thoughtful, helpful & supportive responses. I am coming back to your responses after a few days and after being fairly active on another board where the consensus is 1) get a job, 2) rehome the dog, & 3) get help/put husband in memory care or LTC.
I've been applying to jobs and the idea of working again makes me really happy. I may be able to bring the doggie to daycare depending on some logistics. My daughter and younger son will take him if that does not work out. Still have not gotten older son's input since he is on a business trip, but these are all my decisions. The dog's fate depends on the location of my job, etc. My daughter is crazy about the dog (he's an extremely cute and cuddly little devil) and she and my younger son (who live together) were planning on getting their own dog anyway.
I realized that I have been putting everyone's needs before mine as usual and also making things harder than they need to be. I agree with those who said I should have never quit my job; I should have left the job I hated and gotten a better job, but I stayed home for almost a year instead. It was an experiment, and I learned that it's not sustainable.
My oldest son who lives with us is basically paying me rent, utilities, and for use of the car, etc. and for all meals (which I buy and cook) so he's not paying any more than he would if he lived alone--actually, he's paying less. Once I am working, I wont need any money from him so he'll make his choice about where he wants to live. If he wants to stay, I'll still charge him rent.
I'll get some PCA help for my husband. Then, if/when his needs get too much to manage at home, we'll take the next step.
I agree that I am asking my daughter to sacrifice more than my son and in a sexist way. I did not really see it like that until I saw harshedbuzz's post: "I do see your daughter's point in the assignment of very stereotypical gender-based work assignments. Your son gets to support the household and she's supposed to step away from her professional life to provide housework and mind dad and the dog. That's a flashback to the 1950s. I would bristle at that, too."
--I was taking it all personally and not being fair because I am so used to sacrificing for everyone and so used to not expecting certain things for myself and from certain others (males)...so THANK YOU.
I wish I had not made these trip arrangements, but I did it on impulse and there's no gong back unless I reschedule the trip for next year. I'm still pondering that. As someone said here or maybe on the other forum---this trip is like a catalyst for the next big steps I need to take.
Thank you
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I see absolutely nothing sexist about a daughter coming to stay with her father. She will have a little more laundry added to what she already does and a larger quantity of food to cook or bring in. 12 days should not require housework.
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@ALZWife2023 - I am late to this discussion but I wanted to chime in to tell you that you should go on your trip. You clearly need a break from this, and getting some time and space away from the situation will help you think more clearly about what's next. I've personally found that I get "stuck" when I'm burnt out from the stress of a situation and it's always a sign that I need to step away from the day to day for a little bit to get some clarity. From your posts it is clear that you are always putting everyone else's needs above your own and this takes its toll. You deserve a break.
Your daughter is voicing what a lot of women feel, including myself - we are expected to be caregivers and expected to help in ways that our brothers usually are not. I still think it's fair and reasonable to ask her to help, but it's a good opportunity to reflect on what you're asking from your son vs. your daughter and an opportunity to make sure everyone is sharing the load equitably.
I am early in this journey for my mother so I will defer to others on what you need to do next from a planning and support perspective.
Good luck and I really do hope you are able to take that trip!
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Hello again,
I thought I would update you all as your kind words and insights were instrumental in my recent decision to CANCEL my trip. It’s very sad but the truth is 1) I did not have the money for the trip & 2) my daughter could not afford to not work for two weeks either. We both made rash decisions based on the ideal not the real. So, I’m back to square one with over one thousand dollars in Delta e-credits that I must use by next June or they’ll expire.
This discussion made me really start thinking about everyone’s sacrifices and responsibilities in a less emotional light. I was on a tear about going back to work after I cancelled my trip. I did a bunch of budget and retirement projections. I told my daughter I was definitely going back to work. She was gung-ho. When I told my son who lives with us my rationale about needing more income, retirement, stimulation & health he said it all made sense but urged me not to rush into anything. I then realized I can’t work and come home to caretaking. I can’t take the dog to daycare every day, run a classroom, then come home to cook dinner and the demands of a needy husband. If I work, I’ll spend all my time off (weekends) doing housework and prepping for the week. After realizing this, I felt a bit of release and acknowledged that I can’t have it all. It’s caretaking or working and I really don’t have a choice right now because even if I got help during the day at home for my husband, I’m still the primary caretaker, arranging and overseeing everything including the household (not just his care). All the things he used to do go undone. All the tools and metal outdoor furniture is rusting. The weeds are out of control. He’s left messes everywhere in the shed & basement, etc. This is on top of all my chores.
The only thing he does for himself is make coffee & toast in the morning. He showers and shaves with much urging. That’s it. He does the dishes but often they’re greasy and he’s doing weird things with the dishwasher now so they aren’t coming clean at all. He doesn’t drive, shop, cook, handle any bills or appointments, do any real cleaning or laundry, and can’t navigate the TV. He lets the dog out unattended if I’m not here. How could I ask anyone to pick up all this caretaking for two weeks? The bigger question is: how long can I do all this and put my life on hold?
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Does he have a pension? Social Security? Do you have a mortgage? You are still young, you probably need to add some more years to your SS account.
I don't know if this was discussed above, but you might think now about moving to a smaller, more affordable home, or one with better resources for employment for you and care for him.
You did not mention what you decided about Fido.
Iris
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Hi Victoria 2020 & Iris L.
Thanks for your messages. I’m submitting his Medicaid application this week. Luckily, his income is limited to a modest social security check, no assets, and we are not legally married—so the house is mine and I’ve looked into my social security quite a bit. I couldn’t find a cheaper house. I bought at the right time.Re: SS I’ve worked a lot! My numbers are decent. I’m hoping to get a tax free adult foster care stipend once he’s approved for Medicaid. Then if he needs to go into a facility he’s already on Medicaid. I’m keeping the dog. I can alway send Fido down to the city with my younger kids if I sense trouble. DH is not allowed to walk or feed the dog, and he’s pretty complaint. Of course, DH could always sneak around and do something crazy so I appreciate the warning. I’m on him like white on rice. I’m a lot faster than he is, too! He’s really calm in general so we’ll take it day by day. My older son is here too so I’m not all alone. We’ve got the plan for now & I know it won’t be easy; things will change. Getting him on Medicaid is the big move now & he has a low enough income to qualify. So I’m happy about that. Hopefully there are no snags with the paperwork. Given his situation I don’t think we need the elder lawyer. I’ve printed the POA & health care proxy forms and we just need to sign and get those notarized.
I hope you’re all doing well in your journeys. It’s a beautiful day where I am!
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Well, many months have passed. Summer is long gone. Winter is on the horizon. I wanted to update you all who were so kind to me on this original thread. I hope you are all doing well (given our circumstances)
I finally got DH approved for Medicaid. I am now working one day a week at a job that I love & that pays well. My responsibilities at home are full-time, but I feel much better since I started working.
The emotional labor, so to speak, and the sadness and loss are the worst parts, but I am stable now, have a plan, and accept my position. I am hoping to get an adult foster care application submitted soon so I can get some support for caretaking. I still need to schedule an appt. with a local GP to sign in-state paperwork for PCA or adult foster care services. (DH & I are not legally married so I can be paid in my state to care for him).
That's where I am now. I have been doing a lot of work on acceptance and soul searching.
I feel like DH has progressed noticeably in the last few months. He seems more tongue-tied. He sits silently for hours. He also seem to know that he is out of it and he really wants to be alive and active so he'll do stuff around the house, but much of it is half done or messy.
He loses words and he can't hold a real convo--we just listen to him and agree. We have maybe two or three back-and-forths, but he wanders off and stops making any sense.
He craves physical comfort. He gets very tired and thrown off if we go anywhere outside the house. He lost his temper this morning and threw his cell phone against the wall and cursed me because he could not understand what I was saying. Later, he apologized and made the "crazy" sign by his head.
I won't list all his symptoms, but hygiene and eating are out the window. It's like a having a little kid. He is totally dependent. The chores he chooses to do (poorly and inconsistently) around the house are his only "functions."
Where do you think we are stage-wise?
Sending love & prayers your way!
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Thank you for updating. When you get a chance, look into failure-free activities, such as raking leaves (from all the beautiful trees you are surrounded by) or folding socks and towels. He won't be able to do any task well, but he will be occupied. PWDs do best with a consistent routine. I'm glad things are working out for you.
Iris
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This can help you sort out stages.
A PWD is considered to be in the latest stage for which they have symptoms. A lost of folks seem to straddle stages.
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@Iris L. tvank yiu for the suggestions! Great ideas.
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I’ve looked at this and if any symptom counts then he is straddling stage 6, early & late, which is terrifying!
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We’re in love with the dog so we make concessions. I take him to doggy daycare on the day that I work & I spend a good amount of time & energy to walk him, watch him, etc. the dog brings joy.
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I'm glad you are giving Fido a good home and are enjoying him!
Iris
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Thank you for the update. I read without commenting as our journey didn’t mirror yours but I understand the struggles. Very happy you can find some peace at this time.
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I am worried when you said he threw the cell phone at the wall. Maybe his Dr can RX a med that can help with anger issues. You don't want the next time to have the phone aimed at you. Your dog I am sure is a big comfort to you. That's a beautiful photo!
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Such a beautiful pup!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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