Is assisted living right for Mom even though it angers my siblings?

9 answers | Last updated: Oct 30, 2016
A fellow caregiver asked...

Mom has early dementia (80 y/o). She has no real support system--has a few friends, and is EXTREMELY SELF DIRECTED. She loves animals more than people or family. She has 3 dogs. Her doctor told her she needs to go to an ALF. She has atrial fib, and it sounds like she is having very minor TIA's. Her doctor has called me (I'm 3,000 miles away) and told me my mom needs to be in an assisted living facility. When I broach the subject, my mom slams the phone down. I have power of attorney and manage her finances. She is still independent in activities of daily living, ambulates independently without AD, still drives to store and doctor appointments, but mostly just stays at home and enjoys her pets. My brothers are angry at me for wanting to move my mom closer to me (they think she should remain in her home--I sense some desire for financial gain on their part--they are also NOT available to assist her at all, nor do they want to have her in either of THEIR communities, which is Mom's preference). In fact, my brothers no longer take my calls, so I am operating solo. I don't want to take her to court to get guardianship. I do want to move her closer, in a retirement home where she could have at least one animal, but she won't agree to that. If I do nothing, she will likely have a stroke in her home, and I'll have to try and make the best of the situation on her behalf. At that point, I wouldn't be able to move her because it would be too difficult and costly. My brothers are reactive by nature, I am pro-active, so this situation is difficult for me to manage. I'm not sure if I should let the "chips fall as they may" and let my mom decline (probably she'd live her last years alone in an extended care facility or assisted living facility) or if I should force the issue and do what it takes to get her out here. It would mean getting rid of 2 pets, and she'd never forgive me for that. I have never felt close to my siblings, and I don't think I've seen a more dysfunctional family. I am the person everyone in the family likes to denigrate, including my mom. I work as a professional in long term care, and I feel like I'm looking into a crystal ball, seeing all of our futures. I know what would be best, but can't seem to get cooperation to effect that change. Should I push it, or just let my mom continue to fail? I feel both guilty and angry, but I guess that is beside the point.

Expert Answers

Maria Basso Lipani writes a popular website on geriatric care topics, where she puts her expertise as a Licensed Clinical Social Worker to good use answering care planning questions. Maria is a graduate of Columbia University School of Social Work and is licensed in California and New York.

Probably the toughest part about caring for an aging parent (or caring for anyone for that matter) is that there is no handbook. Only you know your mom and her temperament so it's tough for me to lay out an exact strategy. That said, I think what's most important in all of this is that she be helped to maintain her independence and quality of life for as long as possible. If you make that your goal I'd hope you'd feel neither guilty nor angry about the outcome because I think it's the best you or anyone else can do.

Let me also say that from the outside looking in it seems clear that your mother is happiest in her home with her pets. If you think that she is safely performing her Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs), then perhaps you can leave well enough alone for now. An even better strategy would be to try introducing the idea of help now before the disease progresses and she can't manage on her own.

Again, only you know your mom and what she'd say to this, but I've seen many people who are dead set against "help" or "home care" but are thrilled to get a visit from - in your mom's case "“ a fellow dog lover who can relate to her around animals while making sure that her medications are taken, food is eaten and the house is picked up.

Use the money you would have spent on moving her and paying for an assisted living on finding and retaining this kind of help and see how far it gets you. If it improves things, go with it as long as you can. If it doesn't then it might be time for guardianship.

Community Answers

Workerpriest answered...

The solo aspect with respect to your involvement is very difficult. I agree with the advice you have just been given but I am ambivalent and am tending, from my own caregiving situation to be all for assisted living if that would give your Mom more quality of life.

I am speaking from my own difficult situation. Yesterday, my Mom felt that we can't afford to stay in our home (I pay the mortgage and we can afford it). I have been paying the mortagage for 12 years and though we co-own ( she put a very small downpayment on it of $7800) she takes ownership of it tyrannically I have to say.

We are having a tough time living together as she needs so much assistance and companionship and we now have home support three times a week which is not nearly enough.

In the past month her long term memory has been failing fast and she has advancing cancer with no hope of cure. On August 30 she will have a brain scan to see if lung cancer has metastasized to her brain. The oncologist suggests a major possiblity of this.

But here yesterday she suggested we sell the home and move to an apartment. I would go crazy living in a smaller space with her as she further deteriorates but I will not know until I find out about the brain mets whether we are talking about a slow or faster deterioration.

Thus I said no way were we selling. I could not live with her in a smaller space.

She does not realize I sam already at my wits end here.

So today I woke up with some clarity around this.

It is ultimatum time if she brings the issue up again. Either she stays here and we do not sell or if we do, she does not go with me to a smaller apartment but takes her share of the money (although I dispossess myself greatly to give her half)-- and finds assisited living or the appropriate care level she needs for herself as I will be finished. I will no longer live with her but take my share of the money and go on with my life though giving her emotional support and friendship in her new life circumstances.Regarding the money. I am in Canada and her pension would cover her being in a care facility and the co-owner of the property is not required to sell to cover the expenses for her care.

However, would bring this up with the physician first who I think would persuade her that she now needs to be in palliative care and it is time to go there and not out on her own.

So I think when it begins to be time to think about assisted living that you continue to think about it and begin to open the option even though the necessity might not be immediate.

Because when you are solo in all this, it is very hard to keep perspective on the realities. The person you are caring for will in survival mode and in desparation think of every strategy to keep her life and you don't count in that.

My thoughts now after several years of abandonment in my caregiving situation with my failing Mom.


Bknoll answered...

Wow, to Workerpriest. I think you have come to the end of your line and it should be ok. We are not saints nor slaves. There is financial help for her for assisted living and for sure at a nursing home. Full coverage for meeting certain criteria. For financial problems arising from the joint house ownership get a lawyer soon who specializes in this.

Frena answered...

it sounds as if your mother is managing right now and that therefore perhaps it does make sense for her to continue to live where she is while she can. often, we want to plan for an envisioned future and, while that sounds sensible, it actually takes away the life that is working for a parent. we can't protect them from everything and from their possible future. i'm afraid that sometimes doctors push for assisted living because they see only medical problems and not the personal satisfaction that an elder has from the life they actually live. you might feel better, but would she, i wonder?

Workerpriest answered...

I apologize for writing a response worth 0% helpfulness. I agree with the first expert response and said so and I agree with Frena's response. I took a long way around in describing my own situation by way of wishing to make the point that yes, mother managing OK so don't make any precipitous changes but be vigilant because if the idea of assisted living is occuring to you now, it probably has merit and you should not abandon it but be vigilant about when to do what. IN the end it will b e your call.

Thanks for pointing out b knoll just how frayed and possibly at the end of my usefulness in this caregiving situation.

Still it does not feel good to have made myself so vulnerable in my response today.

Thanks to all regarding this site. I have answered in survey the 100% usefulness and I would recommend this site to anyone needing information, sound advice and support in sharing our circumstances.


Bknoll answered...

Why some moms have to be so hard on us I will never know. My daughters thank me all the time for being their mom and would never want grandma for a mother. And I am talking serious physical loading UHaul's of furniture over and over and restoring homes all of our lives, right into our adult married years. But we feel so responsible to our mothers and so we continue to serve them, because we want them to finally be happy. Please get some home care for your mom a few days a week. This comes out of her funds. If something happens to her then you call Home Health Care Nurse and the nurse comes out under Medicare (100% paid for here in Florida)and evaluates and will continue seeing the patient until not needed. She will also order urine and blood test (lab come right there), Physical Therapy, Occupational Therapy, also Mobile X-rays come to the home of the elderly patient, etc. A lot can be done by services. This agency will also have a Social worker come out to your house and meet with you and help you with contacts and phone numbers of people to help you help your mom. As she declines it may be easier to move her to assisted living. As I know you are well aware that this is natural aging, hard to face, but we have hidden it from our society so well now that we now do not grow up with this stage of life within our families, so suddenly we are awfully distraught. I break down all the time. That is why I was trying to tell Workerpriest that it is OK to be at the end of your emotional and physical rope. It is not a insult from me, it is another natural stage we go through and need to become pro active and protect ourselves, our health and our declining love ones who need more than one person can give them. I have never been so highly stressed and unstable as when mom lived here with me. Can't take it, and I am a very strong lady.

Workerpriest answered...

Thanks b knoll. You caught the wave and your advice is spot on. We do have home support now X 3 a week an hour in the a.m. to help her with adl's that let's me get out to do errands and another 6 hours once a month for me to go to an evening group gatherng a an hour away. 6 hours X 1 a month Wow. And hospice is supposed to start helping now too but haven't shown up yet. As you say the Nurse Supervisors are very good and will increase the support as her needs warrant.

But this woman is so difficult temperamentally that I am on tenterhooks all the time day and night. So I understand how you say you got to the end of your rope from the stress and you are a strong woman.

I hear you and thankyou for saying that. My Mom thinks I do nothing to help her because now I do most of it on my terms and not all on her instant demands when she wants 4 things atonce right away.

Well, pray for me. Doing my best to rely on outside help and negotiate daily here in the home.


Nadereh answered...

It appears that you haven't noticed that your Mom is "ALIVE" , happy and independent..You keep repeating I,,I,,I . So far everything revolves around you...This is not your life's her life..Leave her alone with her pets ( her through companions ) in her own community and let her enjoy her days the way she wants to...

Frena answered...

Nadereh, i like your comments. Elder care pulls together hot issues -- anxiety, family pain and struggle, siblings fighting about love, duty, judgment (and maybe money). Yes, folks, it's all there. And these are actually all separate issues. Caregiving is about how to meet the real needs of another. Doing good by force -- is that good? Making someone give up their valued lifestyle -- is that good? If we feel better with a parent in a care home -- is it really all about us? The target is really a good-enough, happy-enough life for the parent. No such thing as perfect care, totally safe life. As a 20-year professional caregiver I say, as long as no-one's on the floor and food is being eaten -- heck, that's good enough for now.