Double Whammy!

Tfreedz

Hello all, this site has been a lifesaver for me! 

In August I had to have my Mom Mental hygiene arrested (ordered by her PCP)  to get her to the hospital after she refused to go on her own. She was extremely lethargic, dehydrated, and septic. Turns out she was diagnosed with pneumonia and then dementia. She was not allowed to leave the hospital without 24hr care set in place, the SW, neurologist, plus her PCP strongly urged me to place her in MC. I had noticed for about 2yrs prior that her cognitive abilities were declining. She kept me at an arms length during that time so I was unaware of the full extent. She is also the full time caregiver of my 48 yr old brother who has Down syndrome. During the 2yrs, I noticed she wasn’t eating properly, bathing regularly or remembering any recent conversations or any significant lifetime events. I insisted on going to her PCP with her who saw the problems I saw and referred mom to a memory clinic which my mom refused to go to. I was shut out of her life because she thought I was “bossing her around” because I was so insistent she get help. I contacted my brother’s dayhab and told them I was concerned about him and my mother and for them to contact me if they noticed anything wrong with him. They thankfully contacted me after he hadn’t attended for 3 days without being able to reach her. Thankfully that’s what lead to me finding her almost dead with sepsis and he claimed she hadn’t fed him for 3 days.

I immediately took my brother in and have had him since August, that has been a challenge all in itself! My mom begged me not to send her to a MC and refused for 19 days to leave the hospital to come to my home. She claimed there was nothing wrong with her memory and didn’t even know why she was at the hospital. Now I know she has anosognosia but I thought she was just in denial. 

I felt too pressured to make a quick decision and also wanted to reunite her with my brother so I finally got my mom released to my home. My mom is only 70 and now that pneumonia is gone ver physically fit. I am their only family as my father died yrs ago. I’m retired so I thought I could handle the change to our household. My husband and 14yr old son are not adjusting to the change as well. We are a very active,traveling family and that all has stopped. My mom can’t handle going anywhere without being very overwhelmed so we feel like prisoners in our own home. I do have a hired companion come in 2X a week for 2hrs but it’s not enough. Since August I was able to get POA and all legal documents in order. I have placed my brother on a group home waiting list behind my mothers back, she has always opposed to this. I’ve toured several MCs and found one I think would be a great fit. 

My problem is seeing how happy she is in our home and with my brother, I am racked with guilt thinking of moving her and separating them. I can’t find a place that will take both because my brother is too young. I’ve looked into CG in her home but drs insist it has to be 24hr and she can’t afford it plus I can’t find staffing, I also live 30 mins away. She has been dong pretty good with us other than sundowning and sporadic irritation over minor things. I don’t know what to tell her when I move her?!?! Also, I am delaying the move to mc because I love being close to her and already miss her. I can’t ignore my family’s wishes for freedom but I feel so awful.

Thank you all for listening to me vent and if anyone has any advice on how fast I should get her placed or how I rip the rug out from under them, I would appreciate it.

M1

Welcome to the forum. Wow, what a tough few months you have had.

My first thought has to do with your own attitude and guilt: you are not "ripping the rug out from under them" by arranging care, you are doing what is necessary and right. If you can work on that piece, things may fall into place.

I think most here, me included, would say that your husband and son need to be your top priority. Your son only has four more years-crucial years-at home, and he deserves to have them not be smothered by your family of origin, if possible.

Your mother is unlikely to be satisfied or happy with any solution, but safety, not happiness, is the goal. Your brother on the other hand may thrive in a group home. He deserves a shot at an independent life.

Good luck, none of this is easy, but you will find good support here. You're on the right track.

harshedbuzz

Tfreedz-

Wow. That is a lot. Essentially, you have become caregiver for 2 individuals whose needs can't be met with a single plan. Have you assumed guardianship and SSA "designated payee" for your brother so that you are able to act for him as well as getting a POA for your mom?

I am impressed by how much you have accomplished since August. That is strong work.

It would have been so much easier to have made the move to MC from the hospital at discharge. In the months leading to my dad's planned placement, I secretly prayed for a minor hospitalization that would have given me that option rather than having to deliver him myself. In the end, I told dad I was taking him to a new doctor and once there that his doctor wanted him to have some more rehab and that I found him a nicer fancy private rehab (he'd been in one a year prior and for some reason remembered it). I would pick a MCF nearby so that visits can be easily accomplished. 

Good for you to get your brother on a wait-list. The sooner he is able to transition to a supported community living arrangement, the better. One of my dear friends had an uncle she grew up with who had an intellectual disability; his mom refused to hear of any kind of group living arrangement and begged her daughter to take him when she went into a SNF after a stroke which was ok-ish until his sister passed not long after. Cut adrift and grieving those he counted on, he did not adjust to the group home in his 50's and he passed not long after. It would be best if he could have his place and visit your mom once she has settled in. Are there transportation services where you live that can help with that?

HB

Tfreedz

M1 - Thank you for the pep talk and support! I agree my brother would thrive at a group home, I have suggested it for years way before my mom showed any signs of dementia, unfortunately my mother was always against it and thought it showed a lack of care for him on my part for the suggestion. I’ve always felt both of them could’ve lived more independent lives separately if that had happened sooner. I love my brother to pieces and feel very protective of him but with him living with me, I now see how very spoiled her care has made him. I have to work daily on not feeling resentful for the situation we are in now.

Tfreedz

HB - Thank you for your reply, it was very helpful and encouraging. My mom refused to sign over guardianship and payee to me due to believing there was no reason to. We tried with an ELA to get all documents taken care of. I am listed as a stand-by guardian and was told that should be good enough for now. I could fight it out in court but it would be expensive. Since getting POA for her, I now have access to his funds and was told a group home would eventually become his payee so I don’t see the point of pushing that issue either.

Looking back, I now wished I had moved her straight from hospital to MC like you would’ve done with your Dad. I was still in denial and very emotional. Now I’m just trying to figure out how to word her move to her. She doesn’t need rehab for anything and is physically healthy. 

So sad to hear about your friends uncle. My brother loves his day program and staff and thrives on routines so I’m hoping his transition won’t be as difficult to a group home. Unfortunately, we were told it could take a year or more to find a spot. He has been very troubled by moms memory loss and has told me he wants HER to go to a home, lol. Transportation shouldn’t be an issue and I would love to be able to have them visit each other once they both are settled in.

How long did it take your dad to adjust to his new living arrangements? 

loveskitties

You have to be prepared for her to not like a move to MC and not let that deter you from doing what is best for her care and safety, as well as the improvement in your own family life.  You need to get your mind around the fact that you are not doing it "to" her but "for" her.

It seems it takes a while for the LO to adjust to the change, but at a good facility they are trained to handle that.  Most often they recommend not visiting for a period of time to make the transition easier.

Perhaps you could form it as a short term move due to the requirements of travel for you work or some other fiblet.  If she asks about your brother, you could say he is going to a different care facility based on his own needs.

I wish you and your family an easier transition than you anticipate.

harshedbuzz

Tfreedz-

My dad settled surprisingly quickly- truly in a matter of weeks. The first couple of weeks were hellish- he was angry and acting out especially against my mom. During this time, I made sure to accompany her to all visits and make sure they took place in the communal areas of the MCF rather than his suite. 

Dad was really always adamant about not "going to a home" to the degree that he proactively did not buy LTC insurance, create a Trust or POAs in order to make it impossible for it to happen. Both his attorney and his CPA told me they had tried to get his paperwork in order, but he refused. By the time I was able to coerce mom to place dad, he was probably a bit further along. TBH, he got a little easier to work around once he was further along. 

Some people use a ruse that there is an issue with the house (termite tenting or a sewer main repair), but that's harder to do if your family and your brother aren't bugging out, too. 

HB