65 years old, blind, suffering from dementia, and now crippled...[update: passed away]

Wow,** kaylasdad**. Much respect to you.

My elderly widower neighbor has a caregiver come in the evenings to make sure he’s taken all his meds, etc. I suspect there may be a similar program that could help your wife while you’re gone.

I also agree with whoever mentioned talking to your union rep and finding out what options you have. It seems to me you might need to get the process going for applying for FMLA (Family and Medical Leave Act). Your union rep would know. Here’s a boring link:

https://about.usps.com/manuals/elm/html/elmc5_005.htm

When reading your post, I was also concerned about abuse allegations. The only thing I can suggest is that you document every day in detail. If you do consult a lawyer, s/he would be the one to ask about that.

The best of luck to both of you.

It’s not my call of course, but from reading the OP’s posts, I don’t think she should be on her own. Walking on a broken ankle is an obvious danger to herself.

I’m so sorry kaylasmom is going through all of this and I’m just as sorry it has all landed on you. Vent all you need to, and as someone said upthread, don’t let it break you down. If you can get some help, even a little, do it.

Yesterday, I asked kaylasmom if she would be willing to go for the blood work, just in case she changes her mind in the next week and a half. She said “No,” so I went ahead and served her breakfast. Later in the day, I asked her if she wanted me to call the orthopedist and just cancel the surgery officially. She did, so I did. Scheduled a visit in four weeks to have the cast removed.

In the meantime, kaylasmom is finding it very difficult to find a comfortable position in bed. MAYBE if the question of surgery doesn’t come up for a few more days, the discomfort will inspire her to change her mind about it (I won’t fraudulently forge her signature on a consent form, but I don’t have a problem with manipulating her a little). I don’t have high hopes that this will work, especially since the window for even DOING the surgery is closing soon (Labor Day will mark the third week since the ankle was immobilized, and my understanding is that by the fourth week, there will have been too much healing), but it’s worth saving the lab work and CXR orders for another week in case it does.

Kaylasmom is spending nearly ALL of her time in bed now, and she’s being more cooperative about letting me put her into the wheelchair for going to the dining table. I got her a bedside commode a while back, and she’s gotten pretty good about using it without assistance. The biggest problem with that is that, a few years ago, she started having bowel incontinence problems at unpredictable times, including in the bed, so she’s taken to wearing Depends at all times. Pulling down the Depends (without putting weight on the ankle) so she can use the commode is a little tricky, but eventually she should master it. Last night when I went to work, I just took off the Depends to make it easier for her. Her only bowel movement had been a little golf ball-sized turd about four days ago, so I felt it was an acceptable risk.

Thing is, she’s been having a VERY poor appetite for a couple of days, and she’s complaining of an upset stomach, and refusing to take her meds, which includes a Percocet at least twice (and up to four times) per day, for pain in her shoulder. So last night, while I was at work, the removal of the opioids also apparently removed their constipating side effect. When I got home, she had a very satisfactory collection of stools in the commode (which I dumped out). She wasn’t remembering to grab her TP off the nightstand, though, so I had to clean her with a damp washcloth. Then I found a wire coat hanger and sculpted a TP holder to hang on the side of her commode. Good thing, too, because her bowels began to make up for lost time, and she had to go several more times today. Once, she just missed getting out of bed in time to save the sheets and her robe. The robe went into the laundry for cleaning, but I was able to spot-clean the sheets (which I had only put on two days ago) successfully, so I put her in another Depends and back to bed.

Another thing that complicates this is that she hates being in bed alone, so she wants me in the bed with her as much as is possible. She tends to be a light sleeper, and it’s difficult to get out of the bed and accomplish anything without her complaining that she doesn’t want to be left alone (in point of fact, I’m sort of playing hooky from the bed as I write this, using the excuse that I’m feeding the cat and the dog, and preparing to make dinner). I’ve pushed it for about as long as I safely can, now, so I’ma hit “submit reply” and join her in bed for an hour.

ETA: Thanks all, for being there for me.

Your wife may be eligible for additional benefits due to her visual impairment. A hospital social worker or disability rights lawyer (who you would probably see to get a POA for her) should know what to do.

Non-Medicare health insurers often pay for nursing home benefits, should somebody need them (with restrictions that aren’t even as strict as Medicare’s, either). Might want to find out before you need that information.

Many hugs to both of you.

What will happen if she doesn’t get the surgery? Does she understand (can she understand) the ramifications of her decision? What are the consequences for you as her caregiver?

If your life will be easier, and/or she will have better quality of life with the surgery, can you persuade her to do it?

Best wishes to you.

I’m so sorry that you’re going through what sounds like hell. Dementia is a cruel disease. My sister’s husband has it, and she’s the only one around to care for him. It’s been a nightmare. Maybe what our family has learned will help you.

First, see an attorney who specializes in eldercare. Your local council on aging may be a help there. An eldercare attorney can advise you on getting the medical POA and how to go about getting one if Kaylasmom isn’t with it enough to legally sign the form. There’s a process.

The attorney can also advise you on how to prep financially for putting her into a care facility or, at the very least, getting a home health aide. I’m going to be very frank here: your dear wife suffers from dementia, obesity and a precursor to osteoporosis. She is refusing medical treatment for broken bones, can’t follow medical advice, and is visually impaired. Her dementia makes it extremely difficult to take care of her, and you simply can’t be there during the day. It’s important to get all that lined up ASAP.

You’ll probably have to get her on Medicaid. There are rules for this that would, with some planning on your part, make her eligible. As I understand it, you’d get to keep your home and your car, as well as half your savings, such as they may be. But I’m not an expert. That’s where the eldercare attorney comes in. A social worker is also a good idea.

You’ve carried this load alone for too long. Please take care of yourself. It’s an old saw, but it’s true: there’s a reason airplane passengers are told to put an O2 mask on themselves first.

I agree fully, having been through the same, although not nearly as intense or prolonged. But you will only run yourself into the ground. You must get help, I just hope you can afford it.

Dementia is tragic, watching the person’s personality ebb away. As someone said somewhere, in old age you become a parody of yourself.

Man, you have a rough row to hoe for some time, now. Hugs.

With the misstep a couple days ago I think it is time to evoke the Ring Theory of providing comfort: Patient is in the center, relatives in the ring outside that, close friends in the next ring, acquaintances etc in rings further out. Kvetching is from the inner rings to the outer. Only comfort from the outer to the inner.

My sympathies, kaylasdad. Do what you can to take care of yourself while you’re taking care of kaylasmom. I wish there was something I could do to help. My thoughts are with you.

**kaylasdad99, **I can understand that the situation you and your family are in is difficult and upsetting. I don’t have advice to add, but I’ll just say, I admire that you care so much for your wife. I wish the best for your family.

I could not agree more with everything in this post. You are a loving partner and caregiver and you need some respite for yourself.

The power of attorney and other health care directives are so important and if there is definite neurological signs of Alzheimer’s or dementia you need to get those in order before she is completely incapacitated and you have to go to court to take power of attorney.

The last thing that Quartz mentioned is a sad truth that you must be wary of.

I don’t have any to add either but wishing the same things, only for the best for your and your wife in this trying time.

I have no legal advice or much more to add, just another vote for taking care of yourself too. I am so sorry you are going through this - it is awful.

New developments. I spoke with my supervisor last Sunday, and he suggested that I apply for an FMLA case number so I can take leave at least until she’s out of the cast and is safe to hobble on her own. So I gave our EAP call center a ring and asked about that. The counselor told me I should get recommendations from both kaylasmom’s primary doctor and the orthopedist. I found the pdf for the form online, and commenced filling it out. I was halfway through the process when she called to me from the bedroom and said that if I truly feel that surgery is the best option for her, she’ll consent to it.

My immediate reaction was a mixture of relief and apprehension. It’s been more than four weeks since the break; will the surgeon even think there’s time? I called his office and asked the nurse if it’s still possible for kaylasmom to change her mind. The nurse rang off, promising to ask the doctor and get back to me ASAP. Twenty minutes later she called me back with a scheduled surgery date of September 25. SEVEN WEEKS after the break? I said I thought that was a little late (only two days before we were originally going to remove the cast). She saw the sense in that, and apparently juggled some things around, because she now has us scheduled to go in on the 14th.

I got the blood work drawn Thursday morning, and the Chest X-ray at around noon. I’m still going to request FMLA leave for the duration of her convalescence, and next Monday, we have a pre-op consultation with the surgeon, where I’ll learn how long that will be. I’ve got a little more than seven weeks of sick leave banked, plus eleven weeks of annual leave in case I run out, so we should be okay.

All in all, things seem to be looking up.

That’s great. I hope it all goes off smoothly and she recovers quickly.

I have no additional advice, but wanted to chime in to wish you well. You must be overwhelmed. Take care of yourself, however you can.

If I am not for myself, who is for me?
If I am only for myself, what am i?
If not now, when?

Okay, I lied, I have advise from the Talmud. You need to care for yourself before you can help others.

Thank you for the update. We worry about you and your wife, and appreciate you sharing with us.

Glad there is some better news. Please keep us updated on how the surgery goes. Lots of people here are rooting for you guys.

I might not be totally up to speed, but something to keep in mind: after her surgery, Medicare will pay for up to 90 days in a rehab facility (nursing home). Find a good one that gives good care and seriously consider taking advantage of this. She will get round-the-clock supervision, three square meals a day, companionship, hygiene care, physical therapy, and most importantly, YOU will get some relief. She may protest, but I urge you strongly to insist.

My mother fell when she lived in San Diego and was hospitalized, then discharged to a rehab facility. At first she HATED it, but as the end of the three months approached, she didn’t want to leave! It was so much more interesting than being at home by herself all day. She didn’t have to worry about mealtime, or laundry, or finding someone to talk to. And she was even in a room with two other people! I couldn’t believe that she got to like that part, as she is the most anti-social person I ever knew.

Eventually I moved her to assisted living in my city and she also did extremely well there. (In a single room.) Again, at first she hated it and accused me of abandoning her, but finally got to where she like the aides (who were exceptional in this particular facility) and she became known for her humor and her wild socks. She was very lucky at bingo. She passed away peacefully in March at age 93.

Medicare does not pay for nursing home/assisted living care if you just go and want to check in. A lot of people are misinformed about this. My mother had some money saved (thank God) and Assisted Living cost $4,000 per month (that’s about a mid-price). However, many people don’t know about the Medicare after hospitalization option. Someone upthread said talk to the hospital’s social worker. Alternatively (and what I did before Mama moved here) was to hire a Geriatric Care Manager. Google that for your city. I got someone through Jewish Family Services (you don’t have to be Jewish to use the agency), and the woman was fantastic. She was my surrogate in San Diego before I moved Mama. Now that your wife is 65, she is eligible for lots of programs. A Geriatric Care Manager can walk you through that jungle. Or talk to your local Area Agency on Aging.

REALLY give this some thought. Please. You can’t do this all yourself, and you don’t have to.