Need advice/support on next steps

cdgbdr

DH is Stage 5 moving to 6. He is pretty good in the morning but gets confused and has sun downing in the afternoon/evening along with some delusions and hallucinations. He can be agitated and angry at times but that is not frequent at this time.

I still work full time and had a companion with him who abruptly quit a few weeks ago. DH didn't like him and it reached a point it wasn't working. I found another girl that he likes, but she is calling off sick and wanting to change her hours from what was agreed upon. I believe she's sick right now. I had to come home from work today and advised her to stay home tomorrow and let me know by Sunday if she could work next week.

Anyway, I toured a nearby facility that I liked a couple weeks ago. They require 2 years private pay before accepting Medicaid. I submitted the financials last week and spoke with the CFO today. He was approved financially and there's no reason he wouldn't be approved based on his clinical condition.

I'm thinking that unless the caregiver gets on an even keel next week, I would move him to memory care.

I need/want to keep working, and I don't want to fiddle around with flakey caregivers.

I'm struggling with this. I think about it everyday. He doesn't always know where he is or that we're married.

Is this a reasonable approach? Right now the MC has availability. It's a bit of a gamble but I'm trying not to overreact to the current situation.

I have learned so much from all of you! Thank you!

CindiEC

it is reasonable and you are not overreacting. You will have less stress and worry knowing he is being cared for.
I hope everything works out.

CindyBum

I support you in your decision.

I was able to retire, because it was unsustainable to work full-time and be a caregiver, and my DW wasn't as far along as you DH. I feel lucky I could swing it, because it is not sustainable at all to do both, in my opinion.

Best of luck to you. He will be well cared for.

SDianeL

if you are not willing or able to retire then I think MC is the best decision for both of you. Soon he will need 24/7 care and it’s extremely difficult and expensive to do that at home. I don’t think I would wait another week if the caregiver you hired is already not dependable. You will still be making sure he is well cared for in a facility. We understand it’s a difficult decision. You’re doing it for him, not to him. 💜

H1235

I think it is perfectly reasonable. Even if this girl works out, what happens when she abruptly quits. Or the next time she needs time off. If mc doesn’t have an opening at that time you could be in a pinch. Mc will have a trained staff, there will be people his age to talk with and you don’t have to worry if someone is going to show up so you can go to work each day.

cdgbdr

I sat on this overnight, read your responses and talked with a friend this morning. I called the admissions director and left a message that I would like to move ahead. That was 4 hours ago, no call yet. One week ago they had 2 units available. Fingers crossed that hasn't changed.

midge333

@cdgbdr : I think you are doing the right thing. Most of us wait too long before placing our loved ones. I hope there is still a bed available.

cdgbdr

They still have availability. I have eval for him with their nurse next Thursday. I sent the paperwork to our NP today. She may want to see him to complete it. Will await the answer. Will keep you all posted.

cdgbdr

Update: Move in day is 8/21. This is sooo hard for me. Probably the most difficult thing I have ever done. I pray it works out. It's a very well-known and respected, faith-based, non- profit close to our home. It is also beautiful inside and out. Everything has fallen into place so I'm trusting it's the right move.

harshedbuzz

@cdgbdr

Hugs to you.

I found the week between deciding to place dad and actually placing him to be the hardest part of his disease progression. I felt physically ill, and I know my mom did as well.

We created a fiblet to get him there and the day went very smoothly with staff meeting us and taking over. He was angry during the adjustment phase but that passed with about 2 weeks.

Two pieces of advice you didn't ask for—

If there's a close friend/family member who can accompany you both to the MCF or meet you in the parking lot right after, do it. I took my parents to the MCF and had mom over for dinner so she wouldn't be alone until bedtime that first night.

Dad was very nasty with us in the days immediately following his placement. He had enough on the ball to showtime around others, so we limited our visits to public areas of the facility at first. I also went with mom the first couple of weeks so I could extract her from the visit if it went south. She felt guilty and would let him excoriate her as if he had a right to do so. Not on my watch as it made her own adjustment harder than it already was.

One benefit I hadn't expected, was that relieved of being the trigger for his worst behavior and nagging him around eating, hydration, meds and hygiene, their relationship improved. She was able to be more doting and gentler with him which wasn't possible as a primary caregiver.

Good luck. HB

cdgbdr

My sister in law and good friends of mine are actively involved in the plan. I had him there Thursday for the eval and told him that they do very good therapy there and we might need that. Talk about showtiming! He was clearly very confused and openly discussed his delusion about his dead friend, but he then did some kind of dance move I've never seen before! He was hilarious. They advised us to come at a meal time so he can get into that activity rather than dropped off in his room. The DON told me she never tells anyone not to visit, but that for me especially, since he is so reluctant to accept care from others, I might want to wait 2 weeks. I can call to check on him and if he is really agitated, they will let me know. I am blessed to have help and support. Thank you!

Buggytoo

Sending support to you in your decision. You have been thoughtful and methodical in your planning. It is an excruciating moment in this journey and I am praying your loved one's transition gives you the strength to continue your love and care through the next stages.

l7pla1w2

Also, take heart that with DH being cared for, you can be more effective at your job, which is important for your mental and financial well-being.

cdgbdr

Major setback.

The Admissions and DON just called me to inform me that I must have 24 hour care with DH during the transition because he's accustomed to 1:1 care and they can't provide that. I'm bawling my eyes out. Not sure what to do. They have to hold the apartment for 30 days.

BPS

Do they have any suggestions? That sounds not only incredibly hard to do but also to pay for. This can't be the first time they encountered this. Can some of the staff do a little side work to spend some extra time with him after their shift? That might be less expensive and also get him used to the people he will be seeing every day. Sorry I don't have any other ideas unless there is another facility reasonably close that you like?

cdgbdr

She doesn't really care how I do it as long as someone is with him 24/7. She gave the names of some agencies that they frequently see. I have an eval at another facility Wednesday, that I like. The idea of getting all this additional coverage with no end in sight to have someone who will not be providing the care be with him, with the evaluation criteria being entirely subjective is not appealing to me. What a mess.

ronda b

Aren't all pad one on one care before they go in? Why else would they be there.

harshedbuzz

https://alzconnected.org/discussion/comment/250959#Comment_250959

I'd be looking at a different facility. I mean dad was home with mom 24/7 1:1; most spouses who are placed are coming from a situation where they have a spouse or aide with them 24/7.

That they're insisting on a 1:1 from the outset is odd. Don't they have the training, manpower and experience to oversee his adjustment to a MC setting? I've heard of potential residents not being offered a spot (dad based on his diagnosis) but not this. My one aunt was required to have a sitter around the clock, but that was due to recent hip surgery and her inability to recall the need for assistance with getting out of bed.

HB

cdgbdr

I am going somewhere else but they have to hold the room for 30 days and I will have them do that. The DON is an LPN. I am an RN MSN and no doubt I intimidate her a bit. We had a call today with Admissions Director, DON and Administrator. The LPN was inaccurately communicating what was in the H&P and put it all on me. The admin offered another eval and tour of the MC for DH. I thanked her for a compassionate idea and told her I would take it under advisement. I shared that all trust in the nursing there is broken. I could never trust them with his care. I will take this to the CEO and if no results, a board member who used to work with DH. So completely disappointing and wrong. Faith based?

BPS

I don't know if it is common but the nurse at the MC my wife is in is not the right person for the job, maybe not enough experience or support, maybe it is the big fish in a small pond thing. She is the biggest problem at the facility that my wife is in. very little communication, always looking to make sure it is not her fault. Overall the actual hands-on people are good, but the facility nurse is the bottle neck and I have told her and the site administrator. I don't know what it is, if quality nurses that are the back bone of our medical system don't tend to work in MC facilities, or if they just don't have a good support system.

cdgbdr

@BPS

I am so upset. I am still actively practicing nursing, have an advanced degree and over 4 decades of experience. I graduated from a Catholic school of nursing initially. This is so disappointing. I know it's hard to find people. She probably makes 90k with 1 year of formal education in nursing. I'm pulling that out of thin air. Lesson learned: share nothing with these people. I have never been so disappointed in my life. I suppose I'm overly impressed with myself but I'm not accustomed to being treated this way. Keep me in prayer.

Timmyd

One important thing I have learned by being part of this group as I prepare for a possible future of memory care for DW. Be very careful and deliberate about how you communicate with the staff and management of these facilities (government bureaucrats included). The interests of myself and DW may be very different than the interests of the these people. I would never have thought of this before spending time here.

cdgbdr

Agree Timmyd. Lesson learned. I said that to the group today. I will be heard though.

SDianeL

so sorry. My DH had 1:1 care at home and went into MC with no problem. Any MC facility should be able to transition someone unless they are aggressive and need medication first or if they have a medical need. I don’t think I would trust that facility. If you have to hire 24/7 care why do you need MC?

CindiEC

I understand your disappointment , but look at another facility. When I was touring places I learned many things. Some places only want certain residents who are easy to manage. In my opinion if they are telling you this, they really don’t want your husband placed in their facility.
I am sorry you are going through this-it is very hard.

cdgbdr

I went back to the facility that had been my first choice today and took DH for an assessment and tour. They were very helpful, welcoming and accommodating. They have no qualms about his care.