considering moving mom with advanced stage in with me

EJ97

I am wondering if anyone has done this: Moved their mom or dad with advanced dementia in with them? My mom needs help with everything. She is in a broda chair, and they use a hoyer lift to move her, and she is on hospice - mainly for showering and the weekly check ups.  I am single and work full time, but would consider retiring. I am not in love with my job. I would have hospice come to the house, but would need to hire someone to help with daily chores/assistance. I don't know if I am doing this for myself to relieve worry and anxiety, or if it would be best for her. She has been in the group home for three and half years, and it has been mostly good. I oversee a lot and have complained about issues and they have been resolved. There is a new person working in the house where mom is who is not good at all (I am being nice here) and of course there is a shortage of staff for this kind of work.  Most of the other staff is pretty good. To be blunt, I don't think she has much time left so this would not be long term.  If you have done this, what are things I should consider that I have not mentioned above?

dayn2nite2

What is "not good" about the new person?  And why would you retire to take care of your mother for a few months?  Is your company large enough so FMLA might cover that time?

EJ97

Thank you dayn2nite2 for the idea about FMLA. I do have that with my job and can use 12 weeks. Of course none of us have a crystal ball on when the end comes but it would give quite a bit of time. As far as the staff person and her rudeness to me on several occasions, I think it was just the last straw and pushed me in the direction I was headed anyway.

NylaBlue

If taking a break from paid work is feasible, have you considered doing that but leaving your mom in the group home and just spending more time with her there? That way you could do more oversight of her care but have the flexibility to step back for hours or days if necessary to care for yourself. If you move her in to your home, you lose that flexibility; it’s you and her 24 x 7.

Tfreedz

I was thinking the same as Nyla, try spending more time with her at her facility. Maybe try taking the FMLA first then reevaluate after 11 weeks wether or not you want to retire depending on where your moms health is. If you decide to bring her home which I’m sure is mostly based on your emotions right now, realize that you will need a huge support system to help you. You will have her physically close to you which I think would be nice but the drain of being a full time caregiver can take it’s toll even just for a few months. A rude staff member would ruffle my feathers also, but please think this through very carefully.

harshedbuzz

EJ-

I don't see these two decisions as being related which makes me wonder if you are using the rude caregiver as an excuse to quit a job you don't love. This might not be the ideal circumstances around which to make so important a decision.

The rude caregiver could be dismissed next week or leave for a better offer. You could find you bring mom home and can't find quality caregivers to fill-in during COVID-times because so many have left the profession. My ex SIL by marriage is waiting on a 40-week nurse for her son with CP for almost 6 months now and there just aren't any available. FTR, because he's a child, the pay is higher than were he an adult in my state. People I know who need aides for their adult children with ASD and ID have been waiting over a year to get help. 

The rude caregiver could also be "fixed" by moving mom to a MCF. You could spend more time with her by taking FMLA or PTO intermittently. 

Wishing the best whatever you decide.

HB

Cynbar

Being a 24/7 caregiver is an exhausting and frustrating task, and it will be more so if you can't find good, reliable help to come in. I haven't placed my LO, but I've noticed a consistent theme from those who have: when they are in a facility, you can spend time and just be the spouse/daughter/sibling instead of the frazzled caregiver. I can't overstate how hard it can be to care for an end stage dementia patient, especially if sleep becomes an issue. Plus, if she is well adjusted at her current place, do you really want to put her through a change? My recommendation is to apply for the FMLA, perhaps the intermittent kind, and spend more time with her where she is.

dayn2nite2

I also agree with sticking with the facility, because anything can occur with the "rude" caregiver.  That person might not even be there in a month, but if you remove her from that placement, you probably will not be able to get her bed back if you decided even in a week that you can't handle the exhausting workload.

Hospice will provide VERY minimal support to you at home.  A bathing visit a couple of times a week, a phone number to call, a nurse maybe coming by weekly for 20 minutes.  You already said you would need to hire help for other tasks, so this arrangement is already deficient.

You have to have a life on the other side of this disease - to have to live it sick from stress, injured from lifting her by yourself, or worse is no way to live.

I see the choice as 1) take FMLA and spend more time at the group home with her.  2) take FMLA and find another facility to move her to.  Retirement should be a decision you make because you are ready to retire.  If you are, great.

mommyandme (m&m)

I’m with those that think leaving her where she is is the best choice.  Also thinking that just spending more time with her in the group home could satisfy your need to be with her and care for her.  I’m sure the staff there would welcome your presence. 

I have my mom at her home, who also needs help with everything, though she can stand with assistance and pivot, kinda.  I’ve contemplated the added equipment I will need in the near future and what that looks like for me and the support I’ll need.  If your mom already needs a hoyer lift, that’s a lot in itself and IME for safety reasons its a two person process..  She may have to stay bed bound at your home and be changed and bathed in place.  Maybe hospice can shed some light on your decision.  

The new person needs a little training to your mom and the facility.  People can be trained and usually want to do what’s in the best interest of each patient.  I’d give the newbie a bit more time and see if they can adjust.  

I hope you can come to terms with a decision soon to ease your mind.  

Linda_Miami

Hi EJ.

Ugh.  There is no easy answer to your dilemma.

I care for my mom at home (always have) so I will tell you things that you should consider.

1.  Even if you care for your mom at home you will still have anxiety and worry, but now also add in stress and lack of sleep.  

2.  On top of everything you normally have to take care of (cooking, cleaning, shopping, house/car maintenance, etc.) now add in her care 24/7.

3.  Have you cared for her in the past?  Do you know what it entails?  

4.  You cannot do this alone.  You must hire help.  Having someone in your home all the time is not easy either.  You will need to manage them and they will do things differently than you would and that could cause anxiety.  Also, they may quit or call in sick frequently.

That said, I totally understand you wanting to bring your mom home with you.  Especially if she is at the end of her journey.

I say take a 3 month FMLA.  For the first month try spending time and caring for her where she is (assuming this is allowed due to COVID).  Then if you decide to bring her home, you still have 2 months of FMLA left to get her settled and figure out your next step.  To retire or not to retire.

Best wishes.

  

EJ97

Thank you everyone for your replies and telling your experiences with home care. After some sleepless nights and a lot of stress, I decided to leave mom where she is. I guess we all have to accept our limitations and know that things will never be perfect. And, I am not sure my mom would want me to give up my life (which I quite like) to care for her, and the move might not be good for her. My heart was in the right place, and sometimes the reality is hard to accept. Many or all of us on this forum probably always feel like we wish we could do more, and feel we are not doing enough. My heart goes out to you.