Hello I’m newbie here. My mom is unable to live alone. I moved her in with me at the end of October. She is 88 with COPD and diastolic heart failure. She is on O2 24/7. She came with her special needs older dog who she dearly loves who I am also now caring for in addition to my own pets.
This all happened 4 months after I retired from my job. Although that is good in one way, I find myself with bouts of sadness over my short-lived freedom. She does not like to eat alone and does not like when I go out for more than about an hour or so.
I love my mom, but she is a bit more needy than I expected. Any advice on establishing boundaries and maintaining my sanity?
Our Forum is dearly a help for support. I’m checking in to see how you are working out with your life. You do love your mom, but do not have her great needs take over your newly retired life.
I’ve learned how caregivers have died ahead of their recipients from extreme, long-term stress. I cannot stress how much you need to take care of yourself. Please Place the Oxygen Mask on yourself first if you choose the caregiver route.
Be organized re care needs, paperwork, legal stuff, medical stuff, supplies, equipment, and suppliers, financial planning, financial record keeping, medical providers, medicines and doses, diet, caregiving help sources, etc. use files, notebooks, spreadsheets - whatever works for you - but to keep your sanity, have a system.
Have a plan. Have back-up plans to the plan. Be ready to adjust your plan. Do you have help? Can you find help? Can you afford help? Will you use an agency or a private care-giver? Don’t try to do it solo unless you really have no choice due to finances or lack of resources. Sites like care.com are a big help. If you do have to go it alone make some time for yourself. Eat right - get sleep - exercise. Explore what government assistance might be available and apply for it.
Build a medical and legal team. Do you have POA, HCPOA? Is a DNR appropriate for her age and condition or is a full code appropriate? Can she ambulate and get in your car for medical needs or do you need to find a transport company, mobile urgent care or a Primary who will televisit. Having both is optimal. Do you have a lawyer and doctor for times when you have legal/medical care questions?
Understand that caregiving is sacrifice, all consuming, a huge commitment, and not for everyone. Make the best decisions you can - do what you can, not what you can’t, and go easy on yourself. None of us are super-human.
Lastly - you simply cannot let her dictate how the living arrangement is going to work. In the short term you will feel like the dutiful daughter, but in the long run you will feel trapped and resentful. Have boundaries and keep them. Good luck!
You M has been with you for four and a half months. She may feel that she ‘is settling in nicely’, while you are less happy. Say now that you both need to review the situation after 6 months. That’s reasonable. You will both have tried it, and you have time to consider options before the ‘review’.
Things to consider:
1) Get the paperwork under control, as suggested already. If she is legally competent now, that won’t last forever.
2) Check out the finances. Some posters find that M ‘can’t afford a cab fare’, but makes automatic donations to every charity that has her email address, including dodgy ones. Again, what M ‘wants to do’, is not the point. Unfortunately, her privacy about her situation, stops being the point as well.
3) Think about your ‘rules’ if you continue to live together. You probably started off willing to do whatever you could to ‘help her’. To preserve her independence, you really need to get her to do whatever she is able to do, even if it takes her three times as long.
4) Your requirements for ‘time off’ for you. You are already finding just how difficult this is being for you. It needs to be negotiated, and written down clearly.
5) The ‘care’ alternatives, and the funding available. This site is a good place to start. If you click on ‘resources’ at the top of the screen, and then on ‘Caregiving topics’, more clicks will take you to many helpful sites, including professional articles and previous questions and discussions.
6) The local care alternatives that might work well to enable visiting. Then try a couple of visits. Get your ‘eye in’, ready for when you may be taking M on a follow-up visit. You don't need to push these are the first review, but you need to know yourself that there are alternatives. And if M refuses to consider any change, you may as a last resort need to tell her that the alternatives are the back-stop option.
7) The local costs for private in-home care. You have time to ask around about local options and their reputation.
Get M aware that a review is coming up at the end of April, 6 months from the end of October when she moved in. She needs to know that there are options and alternatives, and that she also needs to agree on the way forward if your home is to continue to be an option. Set a second 6 months review date after you find out how implementing this one goes! By then, you won’t be ‘a newbie’.
Best wishes, and good luck, Margaret.
BTW, I had just retired when my sister moved in with me. And guess what? I ended up taking a part-time job simply to force me to leave the house every afternoon so that my sister would "lean" more on her outside companions.
Please make sure you take care of yourself and that you easily forgive yourself when you are not as patient as you think you "should" be. It is very difficult at our stage to have someone so dependent on us; add to that the emotional sense of commitment to a Mom (or in my case, my "baby" sister).
1) “I don’t think she would willingly go to a senior center or adult daycare type setting”. If she needs to go, “willingly” is not the point. You already know what she ‘wants’ – to live in your home for free, with you there all the time. If you have trouble after just a few months, how about 15 years of it?
2) She “does not have the money to pay for homecare”. She must have SOME money. You need to think straight about where it has to go.
You need a cold shower and a reality check!. This is a very different reality from what you expected when you retired.
However, you need to structure her/your usage of her money is a way that is not considered "gifting" under Medicaid guidelines. I don't have expertise in that area but some others can advise.
If she is able to safely stay alone, then don't be bound by her one-hour limit, just because it's what she wants.
You could try taking her to a senior center for a half-day or a day. Often people who don't expect to like it and protest the idea end up enjoying themselves. You really need the breaks.
I wish you well. It can be so draining. Don't feel like you can't find ways to take care of your own needs as well as her.
A little bit of anger over it might be a good thing. Your mom apparently didn't plan for her old age care in order to have enough money to finance it. Her only eldercare plan was you! If you're not angry yet, you will be. Anger and frustration go along with caregiving, especially when we realize that we've been had.
She is demanding, seems to lack empathy for your needs, and emotionally needy. I've been home caregiver for both parents, a relative, and my husband. I know where this is going. Does she really have NO money? Doesn't she get a SS check every month, or a pension from somewhere she or dad worked, VA benefits, or disability from something? I mean, before she lived with you, where was she? Doesn't she have possessions that could be sold - a car? A house? Anything?
You're worried about setting boundaries with mom, but you've certainly set boundaries with us. Like, "Mom does not have the money to pay for homecare. She has never been very social pretty much kept to herself so I don’t think she would willingly go to a senior center or adult daycare type setting." And, "mom cannot afford assisted living or to hire someone to come in and help." By setting these boundaries, you've eliminated many actions you could take per our advice. You are VERY good at ruling out things you/mom can't/won't do. You just can't do it with mom yet. But I'm sure you will learn! I wish you luck.
My only advice is don't let your bouts of sadness over your short-lived freedom become resentment!
You should still have your freedom! Just because mom is living in your home does not make you a slave to her wants and needs. Hire (with mom's money) someone to come in and help with her needs. Find an adult daycare program or senior center she can attend for socialization. If she prefers to sit home alone while you are out, let her. You do not need to sit around with her, just because she wants your company!
If she can afford it, consider moving mom to an assisted living community.
She would have trained staff to provide help and keep her relatively safe in her own apartment. She would have other elders to socialize with. And, you can visit as often as you want. She would also have the freedom to come and visit you.
Establish those boundaries, and try and simply enjoy some time with mom while you can. Schedule it in your day, if you have to. Just plan on doing something you both might enjoy. Looking through old photos, playing a game, just talking and reminiscing, do household chores together. She will enjoy the attention, and you will feel relief that it is on your terms.
First of all, know that how you are feeling right now is perfectly normal as a caregiver.
Best advice I can give is to get help and not to try to do this alone. If your Mom can't afford private pay for home caregivers then start with the Agency on aging in your area. They can guide you to helpful resources.
Yes, your Mom may be resistant, mine was too, but you have to set boundaries for your own sanity and health! Trust me she will adjust and you will help her understand that you cannot do it all alone.
Take care of you! I wish you the best!
If your town has a senior center, sign her up and start dropping her off there a few days a week. Or put her in adult daycare. Or bring in homecare. Make the caregiver/companion take her out of the home and keep her out for the duration of their shift, or you leave for it and do you own thing. Of course none of this is free, but your mother pays for it not you.
If you don't set some boundaries now life will become unbearable in your house.
You need a break and a life
you didn’t retire to give up your life. Also anyone you’re related to or know who can help a little
you need at least care people coming in and helping with cleaning of your mum-
if you think the task really is too much for you then address it if mum needs fulltime care and you can visit -
you have a lot on
too much in my opinion
Something has to give
if you haven’t anyone you can confide in speak to your doctor
tell him you’re exhausted and see what he suggests ?
best wishes
However I will add a few things to mull over.
1. It's time now for you to be scrupulously honest with your Mom. She's an ill lady and brings with her an ill dog. You need to let mom know that you will "TRY THIS" but there are no guarantees that you can live with this level of caregiving and management of an ill pet; in fact you may NOT be able to, and still have a life of your own. Tell her honestly that she is 88 and has lived a full life, but you have just reached what SHOULD be some of the most free years of your life before YOU yourself are elderly and in need of care. Let mom know that when this isn't working for one of you, either you or her, then placement will be required.
2. Get to the attorney for legal documents and WHILE THERE get a plan of care put in place that you both sign. This is a shared living cost in which you get paid. As shared living it isn't taxable as rental would be. This will cover a lot of her needs and give you a cushion to hire in some care if you choose.
I wish you good luck. For me it was ALWAYS clear in my own mind that I could never be hands on 24/7 caregiver in my home or the home of another no matter HOW much I loved them. And I wasn't called to do so, happily. But I wouldn't have taken this on, myself. You have apparently felt this an option for your life. Treat this as a trial as to whether indeed it IS doable or it isn't. If it isn't, be honest. There will be tears and mourning. This is all WORTH mourning. Again, good luck.
I would get a helper in a few hours a day so that you can leave the home to do things for yourself. Not sure she if she is eligible for hospice yet. I do know my MIL had COPD and emphysema and she had hospice for well over a year which was a surprise to me. She had a caregiver through hospice for a few hours a day/five days a week. As time went on we needed to get more help in but those few hours hospice provided each week were good initially.
And sorry I would do something about her dog unless you truly have it in you to take care of a declining animal as well. On top of your mother's issues taking care of a dog that in all likelihood is incontinent and arthritic would drive me wild.
Maintaining sanity -- know when you cannot do it anymore and be open to other options than her living with you. We all have our own threshold of what we can tolerate and do not feel guilty when you reached your threshold. Remember, you did not create this situation.
Practically, make sure you have POA and health proxy and your mother has done her will/trust. Make sure you know your mother's financial situation inside and out.
Best of luck!
Sadly you will find on here that you are not alone in doing just that.
The important thing here is for you to set and maintain strong boundaries, and that you continue doing the things that you enjoy doing so that you don't get lost in the mire of caregiving, which is easy to do.
You must remember that you matter too in this equation, and just because your mom doesn't like to eat alone or be by herself for too long that that really doesn't matter, and that you must allow her to do just that...eat by herself, and be alone for longer periods. And if need be you may have to hire(with moms money of course)someone to come stay with her so you can get out and have some fun.
And of course if her care gets to be just too much for you, then don't hesitate to look into placing her in the appropriate facility where you can get back to just being her loving daughter and advocate and not her overwhelmed and burned out caregiver.