Security and housing

One thing you have to admit about my mother is that all my life, she kept a roof over our heads AND made us feel secure that we weren't in danger of losing it. Even after Daddy died suddenly when I was sixteen, she figured out how to stay exactly where we were, in the elite neighborhood. Okay, it didn't hurt that they'd bought this house on the GI bill and had a 3% interest rate (that was 1967, after all), and that she got a couple of checks from the VA until I turned eighteen, and that the house payment was around $353 a month. However, she had no skills other than "great housewife" to offer the world, and she had a teenager and her own elderly mother to house and feed.

Once she was deemed by the hospital/doctor to "need to go to a facility" that last month, she couldn't handle it. I wanted to keep her here at home as long as possible. But just before Thanksgiving 2015, she had a blood-loss event (from her digestive tract--TMI) and needed a transfusion. The home health people said she should go to a "respite care" rehab for a week. When that week was up, I arrived to find that she was being "thrown out" of the place and I was told that they thought she had pneumonia and I should take her to the emergency room. What?

From the emergency room she was checked into the big hospital and kept for a week. The doctor said he would only release her to a rehab and he thought she should stay there. Thanksgiving was coming up and he said he'd release her the day before . . . but when I got there, he said he could not do that in good conscience because her white blood cell count had soared suddenly. The day after Thanksgiving the hospital called me to tell me she was being sent by ambulance to the last-choice place that I had put on the list. This was around 6 PM. She was hysterical, but they just didn't pay attention this time and took her on over there.

From this point, she spiraled downhill fast. She could no longer stand on her own and they had put her into a wheelchair, which she said she liked because she didn't have to work as hard. They strapped her into the chair (I had never signed for such a thing and I know it was unlawful, but they meant well because she'd forget she couldn't stand up and she'd fall on her head, regularly) and wheeled her to the nurses' station central area where she could be watched more easily. For a while they allowed her to sleep in the front room next to the Christmas tree, but she fell off that sofa twice and they started putting her in her room again, with an extra mattress on the floor for when she pushed the rails down and fell out of bed. They stopped bothering to dress her and kept her in the hospital gowns she'd been wearing when transferred from the hospital that night. I couldn't get anyone to help me dress or feed her, even there.

You are saying, "They should be sued!" but there really is no way to do that. There is no way to "prove" anything, and really no point. I'm just saying . . . I tried to get her out of there, but by this time the wheels were turning and she couldn't swallow liquids unless they were a certain thickness and she would grab madly for whichever arm she could reach and beg for help, *and* I was told by my husband that I could not bring her back to HIS house, for the sake of his sanity (and he's the breadwinner except when I sell a book, HA), so I was stuck. I still hoped to win the lottery or sell a book to the movies so that I could get her back home with full-time care, but that never happened.

Part of the reason she felt so panicky was that she no longer had a home. The people in the facilities are either resigned to their fates or are scheming all the time on how to be taken home. There IS no such thing as a pleasant place with fun activities.

I used to believe, "Life at all costs!" That someone even in an iron lung or in a coma would rather LIVE and have the chance of a sudden miraculous healing. That they were happier being kept alive. Now I see what a fool I was. A good quality of life at all costs. Let them stay home, even if you're afraid they'll die in the house. So what? It's better than dying in a facility. No, REALLY. You are thinking of yourself, and not of them. I know, because that used to be me, "life at any cost."

What I want to say with all this is that . . . if your parent(s) seem to be failing and you think they should "go to a facility," think again. If they have home health and perhaps a family member to check on them once a day, and some way to know they are put to bed and taking their meds, LEAVE THEM AT HOME. They might fall. SO?? You could get them one of those LifeAlert necklaces. There are ways to get them fed, and there are services that'll send someone to do light housekeeping and make a meal to put in the fridge, and many things if you have the cash to do it (or insurance.) But if they do fall down and die at home at this point . . . it is a blessing. They went and left US, but they were in their own home looking out at their own birdbath and with their cats at their feet. They might have been struggling to cope with the Meals on Wheels or whatever help they had, but trust me, they were better off at home.

You notice (from reading the news) that the kids who have trouble in school are often the ones without a secure home. They've been shuttled from home to home, their parent(s) lose the house and they have to follow wherever the parent can lead, the parents flake completely out and leave the kids to their own devices. Without that security, kids cannot do well.

It's the same with elderly parents. If they do not feel secure, they're twice as bad to take care of. At least I know that MY mother believed (accurately or not) that if she could get ME to come take care of whatever it was, it would be done right. She knew I would keep her safe. She wanted to stay here at home with me because she knew nothing really bad could happen, that I would keep things rolling and keep everyone fed and bathed. She didn't really want the attendants (home health) to touch her, because she wanted ME to do EVERYTHING, but I made her let them dress and change her and help me to whatever extent they would (because I simply could not do it all). Once she was put into that final rehab, it finished her off because she realized (even though I told her otherwise) that she was stuck there from then on unless I came into a large windfall or became President. (I would do a better job than anyone we have on tap, but whatever.)

I want to be clear about this. She could no longer walk. I could no longer lift her by myself. When she fell, it took me PLUS my husband OR a nurse/attendant to get her back up and into the bed or chair. This house was built in 1967 and the doorways are not wide enough for a wheelchair, and I was already broke, so I couldn't have the doorways widened. (The hallways aren't really wide enough, either, but I could have kept her in the other end of the house, where her bedroom already was in the former gameroom suite.) But I could not get her in and out of the van. She couldn't or wouldn't remember what you said a moment ago about how you were coming RIGHT BACK from the OTHER END OF THE SAME HOUSE and could not remember not to try to stand up on her own. I was already overdrawn and overextended and could not hire nurses or help. Had I been able to take care of her at home for that last month, I would have.

Want to see the diff between when *I* took care of her and when *they* took care of her? With a staff of several nurses and many attendants, and people overseeing everything constantly, she would stand up and fall down on her forehead all the time. She never did that here at home. She would fall on her bottom and I would hear it and come running. It never hurt her that much--just a few dings on her arms and legs. But at the facility, they were constantly sending for the mobile X-ray unit to check for concussions. I think they ignored several concussions because they figured it didn't matter too much, as she was already messed up. You have to know that they're overwhelmed and underpaid, and most of the attendants don't even speak English very well, but I felt that the last bunch really cared . . . just wasn't able to do right by her. And I was not allowed to, there at the end.

When *I* took care of her:



"It just broke! I wasn't anywhere near it! Honest."

When THEY took care of her: (WARNING. BRUISES SHOWING.)



"Help! Get me out of here!"

They wrapped her arms because she had so many cuts and bruises and they didn't want anyone (ME) to see. It kept her from bleeding on their furnishings.

But anyway. She's safe now. She's with the ones she loved the best and in the best place. I have to accept that and move on to try to rebuild my own life. Remember, guys, we are not promised tomorrow. Those who died last night had plans for this morning, and those who died this morning had appointments for the afternoon. As Willie Nelson has said, "All we have is right now." So let's not waste a moment of it.

Tell me how I can help you (spiritually or mentally) and let me know what to pray for. That's what I'm here for.

DAY ONE: The actual diagnosis

"Dementia? No. She's still very sharp."

The neurologist looked at me pityingly. He brandished a clipboard holding the exam he was about to give to my mother to see what stage of dementia she was in. It was right after Christmas 2014, and she had been admitted for a blood transfusion (I had been begging them to give her one ever since her hemoglobin level had dropped to 7, but the regular doctor didn't want to do that--even though my premise is that with pernicious anemia and COPD, she just wasn't getting enough oxygen anywhere by that time) and for pneumonia. They were running medical tests on her because they believed she had NPH, a normal-pressure hydrocephalus that causes pressure on the brain, incontinence, a failing gait (translation: lots of trouble standing and walking and getting started walking), and dementia.

She looked at me in bewilderment. "Nonsense!" she said, as always. "I'm fine."

But as he asked Mama the questions, it became evident that I either had been covering up for her (unwittingly) for some time, and/or she'd been concealing the extent of her loss of knowledge.

"What year is this?"

She looked at me. "Um . . . 1989."

"What month are we in?"

"October."

"Now, you know better, because we just had Christmas," I began, and they shut me off. "If you want to stay in here, don't help her," the nurse said sternly.

"Who is the US President?"

"Um . . . O-something. The colored man."

I winced. She hadn't talked like that since the late sixties. She never said "colored." Where had that come from? Yet the doctor just made a note and went on.

She did know that we were in Richardson, Texas, that she lived here at our address (which she remembered perfectly), what Daddy's name was, what her mother's name was, and where she was (the new hospital). She could no longer sign her name legibly, draw a house (you're supposed to be able to draw a house like a little kid will draw), or read aloud to the doctor. I think she was blowing off that last one, because later when we had occupational therapists testing her, she could read questions aloud and then answer them fairly well--at least until August 2015.

The doctor turned to me. "She's in an intermediate stage right now."

"She IS eighty-five. Maybe she's just a little senile."

He managed a serviceable grin. "She has no short-term memory. She can't remember what happened ten minutes ago."

"Of course I can," she said haughtily. Her hearing might have been failing, but she could always hear things she considered insulting.

"How do we fix this?"

He chuckled. "When you find out, let me know."

"Her regular doctor thinks this could be due to something they can fix. Like her diabetes, or a drug reaction, or something. He already took her off several prescriptions and put her on the Alzheimer's drug."

"Well, I'll send him this report."

Everyone left the hospital room and my mother looked at me. "I want to go home."

"You still have an infection they're treating with the IV antibiotics," I pointed out.

But now I remembered things. On our family trip to Monterey, California, she not only had been unwilling to get out of the car to take rest stops (my husband got Depends and made her sit on them on the seat because she wouldn't wear them--she said it was too hard to walk to the rest stop bathrooms), but she'd been asking me some weird questions to which she should have already known the answers. She was well aware of where we were during the journey, but she zoned out quite a bit, which was unlike her. Had she really been going into dementia? Could we not find what was causing it and fix it?

The tests came back saying that her NPH could not be shunted away, as many cases of hydrocephalus can. ("The switch gets flipped back on," they said, in those who can be shunted to relieve the pressure of too much CNS fluid.) I asked what I should do and they just said, "We'll send home health to help you out for an hour three days a week. She'll go to rehab when she's discharged to get her walking better."

The rehab wasn't terribly successful. She was already disabled and frail, and she made very little progress. She spent her time phoning me and begging me to bring her home. I kept telling her that if she would do the therapy (including speech therapy), she could come home. She still made me come there every day and take her out on a drive in the van for most of the afternoon, including getting her fast food (which she mostly didn't eat, except for the diet Coke.) She started wasting away. Her pants would fall off as they walked down the facility's hall for therapy. The physical therapist told me, "Bring her some pants!"

"What size?" She'd worn size 14/16 for many years.

"About a ten, I'd say."

I managed to buy her the clothing, but at these facilities, even though you write the patient's name in BIG LETTERS on the inside waistband with a Sharpie, everything good gets stolen. I had to resort to going to upscale resale or Last Call and getting three or four pairs of pants and six tops at a time, just about every couple of weeks. When I complained to the staff, they said there was nothing you could do about that, that it was endemic. They also took the battery out of her cell phone. When I brought a replacement battery, they took and lost the entire phone. But she found phones in other people's rooms and at the nurses' stations, so she still called me. At first she would call 911 and beg them to send the police to rescue her from being taken against her will. This did not sit well with anyone.

Anytime someone would say she had dementia, she would say, "I do not!" as if we were fifth graders taunting her about being short or whatever. She really did not accept this onus. She could make good sense most of the time, still, back then.

Eventually when her insurance days ran out, we went home and she seemed okay for a while, but soon she began panicking all the time and could not be left alone at home. She got so that she couldn't be left alone in a room. I could get her settled in her chair at the breakfast table with the TV on a good channel, the dog at her feet, and a plate of food or snacks in front of her, and tell her I was going to put away the laundry I had just done. By the time I was down the hall, she'd be shrieking my name and standing up to hobble down the hall on her walker. She was terrified I wasn't coming back and afraid of being alone. I asked what she was afraid of, and she said she didn't know. The only times she remained calm were when I loaded her into the van, put the Pomeranian in his riding seat (a dog bed fixed in the middle of the console between the front bucket seats), and drove her all over Dallas and Collin County. She would ask to go to Highland Park or to White Rock Lake or to McKinney, and she'd recognize everyplace we went. She appreciated the flowers and the various beautiful things as we drove by. I needed to keep her calm to maintain my sanity, so we took a drive to tire her out most afternoons after our home health paid her a visit. (I will tell you later how worthless our home health turned out to be and why I think that was the case . . . but at least the attendants changed her diaper and wiped her down with the bath wipes and Jergens lotion, and made sure she chose an outfit every morning.)

We are not talking about a stupid person, or even a "normal housewife." My mother was a college-educated psychology major who had managed a deli for almost ten years and had run her own housekeeping business for several years after that. She was clever, smart, resourceful, and sneaky. The sneaky and crafty parts never went away until almost the end. She is the one who taught me never to break things and to be a taker-carer-of everything material, but in the end she would hobble through the house picking up breakables and smashing them against the wall or tables in hopes that I would come running. She'd even do it when I was standing right there (which is why we don't have any drinking glasses now except the ones I kept over the fridge where she couldn't reach them or in the china cabinet.) I ceased being able to do any sort of Web design or computer consulting because I couldn't stay in here and concentrate. I could do my writing (I'm a novelist) only in bits and snatches of stolen time. (I scribbled a lot on the backs of envelopes and on Post-Its.)

The doctors had put her on strong antipsychotics and calm-down pills when she was in the hospital, so when I gave her the night-night meds and got her into bed around 9 or 10 at night, she would usually drop right off. She had to have her television on all the time, although she had stopped being able to follow or understand it at least a year before. She couldn't read and couldn't concentrate on anything. She couldn't do needlework or crocheting/knitting as she used to. She couldn't do crossword puzzles. She would constantly beg for food because she was so hungry, but nothing seemed to stick with her and she continued to lose weight and have a "failure to thrive" diagnosis, no matter what I cooked or baked or ordered through take-out. (Her appetite did not fail until the last month of her life.) She thought of me as her hot-and-cold running slave who had to be within shouting distance anytime she was awake, or else she would struggle to her feet (and usually fall down--more on that another day) and try to find me. I didn't know what to do for her, although I devoted myself and my husband (to a great extent) to taking care of her needs for that last year and a half.

Towards Thanksgiving 2015, my husband cracked and began shouting at her and at me, and things became so much more difficult for me because he wanted to handle it the way they do in the Marines. "Get better NOW! Do not forget things! Have a short-term memory! Let my wife rest! You are killing her. Leave her alone!" "Sir, yes, sir," was never forthcoming. She would scold him in return or tell him he was wrong about her. "Get her out of here so I can live," he started to say daily. I had to juggle the two of them every evening until she fell asleep. This was far harder on me. If you are the spouse, PLEASE don't do this to your wife or husband who is doing the best they can. I have an ulcer now and am just now getting de-stressed (a little) from all this.

You may be dealing with a similar situation. Has your parent become unable to care for herself or himself? Has he or she come to live with you and perhaps is spiraling down in this same way?

I started this blog so that I could share my experiences (informally) with others who are in this same sinking ship. I am not a pro and my advice is not medically sound or anything like that. I am just a daughter who tried her best to take care of her mother up until the end. My mother stepped across the Veil into Heaven (behind my back--but that's another blog post) the day after Christmas, 2015, so I am still trying to deal with the details of her estate (ha--she was penniless, yet creditors come daily out of the woodwork claiming she owed them and that I should DO SOMETHING NOW) and with my own grief. I had no life at all by mid-2015, and for some time my best friends had been my mother, my dog, and my husband. I loved my mother and had always tried to take care of her as best I could, ever since my father died when I was fifteen. So I'm on a journey of rebuilding and regrouping. If you are, too, maybe I could help you, or we could help one another down this tough, rocky road.

Bless you and bless your patient. Remember--they are not giving US a hard time, at least not on purpose and by choice. THEY are HAVING a hard time.