Mom had a stroke a little over a year ago. She never fully recovered, and is partially paralyzed. Her speech is impaired, but her mind is completely there. I’m her POA and have been handling everything since her stroke. She doesn’t really like the nursing home, and I’ve called a couple other places to transfer her (with better reviews, and tours just had better overall vibes), but hospital discharges and in-house transfers take priority… it’s been about 9 months of trying and still have not had any bed availability.
I’ve been in touch with an insurance case manager and started the process of a nursing home waiver, to bring her home. The waiver has been approved, and now we’re waiting on a ramp to be installed. Mom has been approved for 25-26 hours per week of home health too, so I will continue to work during those hours.
My fear (and my husbands fear) is we bring her home and she’s either unhappy here, too, or the added responsibility is just too much for us.
If we bring her home, is there a waiting period to send her to a nursing home? Is there anything I need to keep in mind regarding her social security income when she comes home with us?
1. Is your husband completely...totally...100% on board with you bringing your mom home?
All you have to do is read a few of the questions that some post where the spouse was not on board with the caregiving and moving someone in.
2. Do you REALLY truly know what it will take to care for your mom?
25- 26 hours a week is the tip of the iceberg. What happens the other 143 hours? What happens when the caregiver that is supposed to come does not show up?
3. There is a real good chance mom will not be happy in your home.
Has she seen a doctor of depression, and maybe anger, anxiety? I would think these are all emotions one would have after a devastating stroke. (Or any medical condition that changes their life)
4. And as you mention what are your options if caring for mom is more than you can manage? How long will it take to find her a facility that will accept her?
5. Is your home, other than waiting for a ramp, accessible for her? Will she be able to use a wheelchair? Will you be able to use a Hoyer Lift? Is there room for a Hospital bed? Is there a bathroom that she will be able to use that has a roll in shower or at least a bedroom that you will be able to get equipment into so that she can safely be bathed? (And not you and your husbands bedroom or bathroom that is YOUR space and you will both need that)
I think the safest thing to do would be keep trying to find a facility that will better meet her needs.
As I said in my last reply, She rarely gets out of bed at the nursing home. The aides make their rounds, but for the most part mom is in her bed watching tv. She gets meds at 7a and 7p. She gets a bath 3x a week. They use the hoyer (which we’d have as well) IF she wants to get into her wheelchair. So while there’s 140ish other hours, mom doesn’t require someone to look after her 24/7. She sits in her room for hours on end, without needing anyone or anything. And quite frankly, she’s had her call light on for over an hour at times and nobody has stopped in. We’ve gotten Ombudsman involved, I’m aware she could get sick, or need changed an extra handful of times.
The other facility I want her in has already looked at her case file and said they can handle her care, it’s a matter of getting a bed for a ‘transfer’ that seems to be the time issue. Quite frustrating.
Yes, everything is accessible. She’ll have a first floor living space and when she wants to be in her chair she’ll be able to navigate the entire first floor.
You are talking yourself into this. You don’t 100% think your husband is on board. You keep telling yourself you can handle this. You can’t,
There is a reason people are telling you to not do this. Hundreds of people on this board thought they could do it themselves too. Now they are mom exhausted, broken mentally (and physically) and wish someone had warned them. Consider the following:
-Whatever schedule you have now will be out the window.
-There will be no more dinners out, no vacations. Friends and family will say to call if you need help, but almost none will volunteer to stay with her if you need time out.
-When do you plan to get things like errands and grocery shopping done? She cannot be left alone.
-Can you lift her multiple times a day and night?
-If she worsens, how will you handle the medical needs?
-Are your toilets, bathtubs, etc handicap-ready? Will her bed have safety rails? Are meds stored safely?
-Can you handle multiple toilet visits, butt wiping, diarrhea, bed urine, and getting her undressed/dressed? Multiple times a day/night?
-Are you able to help with bathing daily?
- If she keeps you up at night, how do you plan to handle work/chores the next day? Same goes for working from home.
- If you get sick or injured, what plan do you have for her care?
- You'll very likely need aides. Are you okay with strangers in the house?
- If you are no longer able to care for her, how will you get her back into a nursing home?
I've said before that people think they can "love their way" through caregiving. That love will be enough to sustain their energy and will. It isn't. Nor is it the same as caring for a baby. Caregivers here loved their elder dearly. They had to place their elder to save both of their lives.
You’re just not getting the answers you wanted. People are giving facts that you don’t want to accept.
Again, I asked 2 questions, and neither of those were regarding everyones OPINIONS on bringing her home. Thank you though.
This site is my lifeline. It helps me get through what had been the most miserable challenging time in my life. I am grateful for the support I receive here. No one else in my life gets how soul sucking this situation is.
I travel from California to NYC every other month for one month stretches of time to ease my sister’s load. Either my sister or I visit our parents every single day at the NH. They are not abandoned by any stretch of the imagination. We simply could no longer do the work involved and knew enough when to stop.
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You express this fear and get comments supporting that fear, from folks who have "been there, done that", and comments from the "facilty bashers" who urge you to take mom home and leave your blood on the floor in the process.
So you accuse us of being "bitter old ladies" leaving comments wishing you good luck that are "outright rude". As if we've got nothing better to do than spend our time sharing our experiences with you on this forum, and as if we're paid by Agingcare to recommend managed care! Laughable, really. You're looking a gift horse in the mouth, is what you're doing, my friend.
Some people read between the lines and see ulterior motives buried in the Truth. They have to learn things the Hard Way, not through advice given by exhausted, burned out caregivers who have gone before you who are trying to SPARE you what they've suffered themselves. Wishing you "good luck" is a prayer for success, nothing more and nothing less.
If you fail at this endeavor, you'll come back and say you now understand what we were trying to tell you.
If you succeed at this endeavor, you'll come back and tell the managed care bashers they were SO right and home care rocks and you've never been happier. That turning your house into a nursing home was The Right Decsision.
There's only ONE way to find out, and that's to do it.
How ever this situation works out, best of luck to you.
I think that no one on this Forum was rude to you, ruthman, and I think few members of the Forum are bitter. You don't know us well. Give us a bit of time before you label us.
I hesitated to answer this simply because my answer would have reflected my own choices, what I have seen through a long career as an RN and as a family member, and because it seemed to me that you truly were thinking this all out already. That you understood at the start that, indeed, this may not work. It may not even bring happiness.
Here's the thing. I worked my entire career as an RN and I loved it.
As you may guess, unless we choose labor/delivery or peds, most of us deal, as RNs with the elderly. Most other patients are out before we can care for them. As much as I loved my career I did learn early on how much of an absolute WIPE OUT it is to care for the elderly. I knew I could never for a single moment take on 24/7 care for an elder of mine no matter how much love I had. I had 12 ill days, 12 holidays and five weeks vacation. I worked three 12 hour shifts a week. And I KNEW my limitations very well.
Speaking of love? When your loved ones come into your home they very quickly move from being Mom or Dad to being the one cared for, the one who is needy, the one who is losing everything. And the daughter? She isn't that anymore. She is the caregiver. The decider.
Yes, it can make you bitter. And it can destroy relationships.
But more than that, it can make you mentally and/or physically ill and it can KILL you. We have seen that.
I take you as an adult, perfectly capable of making your own decision in this matter.
But this I would beg you. Be honest with your Mother from the beginning. Tell her your feelings that 24/7 care in your home may not work for you, for your hubby or for her, and if ONE is unhappy, then the situation needs to change, and she needs to move into a situation where she is cared for by caregivers, and you can visit, and return to being a daughter only, not the "decider." Not the "caregiver".
I trust you to make what you feel is the best decision for yourself and for your husband and for your mother. I trust you to change things if this doesn't work.
I find that children of the elderly come to feel responsible for their happiness. Let me ask you, ruthman? Is life at any age about happiness?
At what point in all her life did your mother not have moments of unhappiness and uncertainty? That is life. A child isn't responsible for the parent's happiness, cannot be made so, cannot take that on.
So don't ask happiness of all this. That's magical thinking. There is no "happiness" in aging to speak of. It's about loss. It's about preparing to let go of life. Contentment? Perhaps. But there will be pain, loss and anquish aplenty, enough to turn the sweetest tea to cold and bitter.
I wish you luck.
And the fact is that is how I end almost EVERY SINGLE response I write on AC. Because, guess what? I truly do wish the OPs luck.
I don't much worry myself about being considered "nice". In fact I think we often do much more good by shaking things up, getting people to think outside the boxes they have themselves so neatly packed away into. I feel they are adults who come with questions. We will answer. They are free to take or leave our advice wholly or piecemeal.
I hope you will update us. Both on your decision and how it all goes for you. That's what the Forum is all about. You, if you take all this on? You will be an expert pretty quick. Because it's a steep learning curve.
I am very happy with all I learned helping my brother at the end of his life, being his Trustee and his POA. I ended proud of him, proud of myself. But, wow. It was one terrifying ride, no matter how much I learned.
You say you will work when her aides are caring for her, do you work from home? If not, you may find yourself unemployed. Aides do not always show up and even before younger people quit working in this field, it was not always possible to have a replacement sent, so you would be it to fill the hours. Meaning last minute call in to your employer.
If she is going to pay you to live in your home, and she should, do it as share of costs, not rent. She pays 1/4 of ALL the household expenses, including increased homeowners insurance to insure that you guys do not have problems if an aid gets injured in your home. If your utilities double or whatever, she pays extra for that increase. It should not cost your family to do this and her building a savings account all the while. KEEP meticulous records. You can write what her share is right on the bills and the check # it was paid by, get a system down that easily accounts for how her SS check was used. Medicaid will require a new application and that means a new look back, in the event this doesn't work out. You do not want to scramble trying to figure it out during a crisis placement, God forbid.
She buys ALL of her stuff, depends, chucks, clothing, meds; prescription and over the counter, special treats, etc.
I pray for all of you that this works out and you all find joy, peace and happiness. I, also, pray that if it doesn't work out, you guys can see it before everyone is traumatized and burnt to a crisp.
May The Lord touch this situation and all of you.
Why does she need to be at your home, to be in bed watching TV all day? Why are you so concerned about her socializing? Does she beg you to spend time entertaining her? Does she get upset about not having a constant flow of relatives coming to visit? Has she begged and cried to you she wants you to take her to your home to live?
Sounds like you want the "convenience" of her staying at your home, so you can get back to your regular life. Seriously? Kiss your regular life GOODBYE. Your house will become a crowded nursing home, with wheelchair, Hoyer, hospital bed, and a ramp outside. You will never have peace back, privacy, date nights with your husband, dinner guests, or any time for yourself....for years.
You mention if it doesn't work out, what to do next. Why move her in, get burned out in 6 months (or less) and try to move her out somewhere else? That's a lot of stress and disruption in everyone's lives, including Mom. To save some money?
BTW, she doesn't have bedsores because she is turned every 2 hours by the staff at the NH. How many years of medical experience with disabled people do you have? The safest thing would be keep trying to find a facility that will better meet her needs.
Don't you miss your own family? You need to come home alone and focus on them...and count your blessings.
I took care of my mother for over a decade in my home and it wore me out. It is physically and emotionally draining.
I wish you the very best no matter what you decide.
Are you, and your husband willing to give up your privacy? That's the biggest issue for me.
Strokes have this tendency to cause hidden damage, like vascular dementia. Dementia of any sort is a real game changer when it comes to trying to do caregiving at home.
You say you will still be able to work? How is mom going to get seen by her doctors, psychiatrist, audiologist, podiatrist, hairdresser? All of those in house services now need to be scheduled and mom transported. And toileting attended to while out.
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