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?
Once she has this in place, you take her to get her free annual Medicare wellness exam and stay in the room during the appointment (and you explain to your Mom this is part of advocating for her). You make sure they give her the cognitive and memory test so she has a baseline.
If your Mom won't do either of the 2 then I would seriously consider moving her out. This is a very important boundary that you need to plant your flag in. Hopefully she already has all her legal docs created.
Your Mom pays to stay: she must share costs for living in your house (including rent or mortgage). You should be joint on her bank account (you will need to do this if you are her FPoA).
You must keep an eye out for symptoms of dementia. "She does not like to eat alone and does not like when I go out for more than about an hour or so" could be a dementia behavior called Shadowing, where they want to be able to see you at all times. It starts out slowly and then escalates. Also, people with dementia lose their ability to apply reason and logic to the most basic and obvious situations or thoughts. They lose their ability to have empathy for others: this may be why she seems oblivious to you not having the retirement you were expecting. Dementia starts very slowly. Once you start seeing regular behavioral symptoms, the elder is already close to or in a moderate stage. And, it is progressive. Not saying your Mom has dementia but you need to know the signs.
One very important boundary is that you are a priority: your well-being, your mental and physical health. Your Mom has other options for care (in-home aids, a facility) but you may not have options. You must protect time for yourself every day.
You are not her entertainment committee, no matter what she thinks.
The caregiving happens on the caregiver's terms. If you don't remember this then you will burn out. The minute she is a danger to herself or others, or you are overwhelmed by her care you will need to find a different solution and it doesn't matter if she doesn't like it. She won't like, I guarantee this. Your "bouts of sadness" can easily turn into resentment and then depression. Just read the plethora of posts on this forum under the Burnout topic.
Do not feel bad or guilty if you wish to transition your Mom out of your home. You can easily visit her often there and still have own retirement. I wish you clarity, wisdom and peace in your heart as you figure out the best solution for the both of you.
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.
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.
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.
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.
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!
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.
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!
See All Answers