Dad is 78 with dementia. He has been a bachelor for 45 years and was living alone in his own home (an hour away from me) but was hospitalized 7 months ago due to mental and physical decline (I was aware of his decline but was unsure it was true dementia). After a 1 week hospitalization he was discharged to rehab #1 for 4 weeks. To me he was getting worse instead of better so back to the hospital (a different one) he went for another 2 weeks (and at that time was diagnosed with bladder cancer). He was discharged from that hospital and went to rehab #2 in February. He is still there now (but private pay as of March.). His cancer appears to be under control but the cognitive issues are worse than they were when we first took him to the hospital in December. He has remained in the same room at rehab #2 but really needs to move. The facility said they can try him in AL (which would be a totally new environment because it would be a studio apartment - not a room, and is located in a different wing and on a different floor). I also suggested he come to live with my husband and I. Not sure if he can completely grasp the idea of moving because now he refers to the room he’s in as “home” and often confuses memories of his house (like checking the mail or parking his car in the driveway like he used to) with the place he’s at now. Keeping him where he is now is a bad idea (financially and socially..... he has cognitive decline but he’s not at the point where he needs LT. The truth is - he needs help and can’t be alone so moving back to his house is out of the question. He’s content now but really doesn’t have much quality of life not to mention the LTC room is very very expensive! I’m wondering if there are AL places in my area that would be a better fit for him. I’m also wondering if bringing him to my house would be a more positive environment. My issue for all possible solutions is THE MOVE. I feel like any move (whether it’s within the same facility, a new facility, or even my house) will be a disruption. Should I consider looking at other AL facilities or would it be better to keep him in the general same environment as where he is. I wish he would be willing to look at other places with me but he says he’s fine where he is. If he knew what it cost he WOULD NOT be fine! Trust me!
Also think long and hard about moving him in with you. Do you have the set up that he will need as he declines? Stairs? Accessible bathroom? Wider halls and doors for a wheelchair? And most importantly if you are working can you take time off? Will there be others that will share the work that will be needed? And how does your family feel about this?
Would he be eligible for Medicaid? Might want to start the process.
Is he a veteran? If so the VA may be able to help and depending on where and when he served there may be a lot of options for you/him. They are updating criteria for "service connected disabilities" all the time for Vietnam era Veterans. This could mean much more help for him if he qualifies.
what type of dementia was he diagnosed as having? That is important to know when it comes to the progress. However, I am an advocate of moving him where he will be around others his age, have activities and get medication on schedule, meals etc. I would choose a place that has a regular AL and a Memory Care AL, and if possible a LTC facility. A studio or a one bedroom would be adequate.
I do not encourage you to have him move in your home. It may not seem hard now, but all you have to do is read stories of others here. Can you provide everything the AL can? Are you prepared to be on call 24/7? Are you ok with it impacting your marriage as well as your own health? Are you ok with not getting time away? These are just a few of the things. You will need to think long and hard about doing that.
This is is a hard decision and I wish you the wisdom to make it.
Check into care homes. The fee is usually less, homes that have been renovated for elder care, lower ratio of patient-staff ratio. Many take Medicaid one the assets have been spent down.
You are right that dad should not be home alone any longer.
There is also an enormous difference in how well they care for dementia/ memory care. Do they just sit in a hall or do the participate in activities? What is the staff to patient ratio ? How long are staff shifts? One we looked at had minimum staff legally allowed , one nurse on call for the entire night and all care givers worked a mandatory double shift. Obviously, didn’t choose that one
one thing I’d do differently though is NOT take a pet. My mother has a cat she dearly loves . The cat is on her last legs but not in pain so we hired someone to feed the cat and clean the automatic litter box daily. That has been a nightmare . The person we hired is great but my mother is obsessed, is sure someone is coming in to hurt the cat so she refuses to go for meals. The cat licks her paws to clean herself and my mother has imaged that to be sores. My mother has literally used an entire months order of cat food in a week over feeding the cat. Her apartment stinks since she leaves unhealthy food out for the cat( who of course does not want it so it rots) . I wish when she came back from rehab we would have not brought the cat. She kind of forgot about her anyway and this has just prolonged and intensified stress and expenses.
Understanding this, make the next move/change a final one (if possible.) Unable to take care of themselves will also include their pet. I used a therapeutic and told my sister her dog died @ the groomer (heart attack) when I found a loving home with 4 children who adored "Gizmo." The expense of any care-facility needs to be seriously considered BEFORE any move. My sister (CA) was on an Assisted Living WAIVER list for nearly 2 years (uses Federal/State-medicaid funds) before "her turn." She had 6 months to relocate to a WAIVERED facility/home with typically no openings and lengthy waiting lists. At month 5 we became incredibly lucky and she moved to a 6 bed home about 20" away. I treat the staff like ROYALTY because their job duties 24/7 are as challenging as they come! Showing appreciation goes a long way.
I just talked to my aunt who is in the beginning of the dementia journey. She has some lapses and gets a little confused, but she is still aware she wants to be in her own home and very clear that she cannot understand why her children did not hire someone to live at her house. It was the saddest conversation I've had with someone in a very long time. My first reaction was to bring her to my state, but that would not do any good at all because she wants to be in her home where things are familiar. Financially, there's no reason they couldn't have let her stay at home until home is no longer familiar. I do caretaking for my mom and there's no way in hell I could ever remove her from her home while she knows it's her home.
Leave him and let the bank account run out.
My thoughts are with you, keep us posted.
As you have already observed, moving dad has lead to confusion about where he lives and you've also seen decline in his cognition. ANY move, whether a hospital stay, rehabs, to your place, AL, MC, each and every one will take a toll on those with dementia. Although plain old vanilla AL would be less expensive than MC, it sounds like AL is already beyond his capability, and even if it isn't, it will require another move to MC at some point. I would consider MC or the suggested care homes (I have only read about them, not familiar with them.) Some NHs also have MC units. Check any places you locate carefully, so that you know what they offer, how much they charge (and for what - one place my brother found was 3k, but that was ONLY for the room!), if there might be additional fees (mom's MC covers up to one hour of personal care - after that we will get charged in hour increments.) Visit the places at various times to observe goings-on, etc. Check into VA benefits if he was in the service, consider Medicaid if needed. If you know how many assets he has and know the cost of a facility, you can determine roughly when his funds might run out, so apply for Medicaid before then. Also, if you think he will run out of funds, choose the facility based on needing Medicaid (not all places accept Medicaid and if the facility doesn't accept it, it means another move.)
conflict with this one! From personal experience I would NOT suggest moving him in with you! All of his care and future care will fall on you. (Cooking, cleaning, bathing, medication, doctor visits, etc) Unless you have NO life of your own, this will not be a good option.
care needs rarely go down... they only get more intense.
I can say that with my dad, I moved him from a 5 bedroom house three states away to a one bedroom apartment near me almost a year ago after my mom passed away. He has rapidly declined in health and cognitive ability, but he seems to like his apartment and having family around. I think he needs memory care, but he does not want to move. It’s a tough decision. Because he moved a year ago, I’m planning to keep him where he is (independent living in a 55+) and get some help twice a week (I currently provide all of his care 7 days a week) it’s exhausting, but i think it’s time to bring in some additional help.
Good luck to you as you navigate the financial and emotional roller coaster of “what to do now...” Everyone here has great advice and is always understanding because they’ve been through it!
Even just taking her to the doctor this last time after some falls and refusal to walk, I had to get my brother involved or we'd have to use transport because I cannot support her weight.
First things first: I agree with Judysai. Before you can possibly decide on the best next step for your father, you need a prognosis, and you need a full cognitive assessment.
I hope you'll come back to us with feedback on the advice you've already received, and that meanwhile your father is doing as well as can be expected. Best wishes to you.
Even I had experienced a case of delirium when I was in the hospital. Forget about sleep. The hospital bed I was constantly sliding down the middle of it making it tough to move back up to a better sitting like position. The food was too spicy. Noise all the time. No window that I could look out, just sliding glass doors on the front of my room. Then the fire alarm went off at midnight with strobe lights which can mess with my balance. I wanted to go home !! I was in tears.
I took my mom home with me from a memory care facility when she was in stage 5 Alzheimer’s. (The facility kept raising her rate.) It was the worst decision I ever made. I was not physically (nor mentally) equipped to deal with lifting and turning her, assisting her in the bathroom, etc. She fought showers and female hygiene. I had to work four days a week, so her care was left to my husband. She did not want to be cared for by a MAN. That created problems. I was exhausted after working and commuting all day but I then had to care for my mother. Hubs and I grew more impatient with each other. Mom would refuse to eat (or couldn’t remember to eat) and I had to encourage her by giving her bites. She would spit her pills across the table. She would repeat things incessantly (50+ times a day).
Dementia doesn’t get better or even level off-it gets worse. At some point you’ll be moving him out of your home and into a memory care facility.
Please don’t worry that you’ll have to move him. Yes, they get even more confused but he should be where is best for all his needs.
My best to you. This is one long, hard journey for everyone involved.