The elderly parent dilemma

[domestic goddess]

Well, my mom is in the hospital again. My db came home from work the other evening and found her laying in the floor, where she had fallen. She was kind of beat up in the fall, and she was hallucinating, which she has done before, but this time she didn't seem to realize they were hallucinations. Usually, she is aware when she is hallucinating, and doesn't even tell us when she is, but not this time. In the ER they found that she has a severe urinary tract infection and acute renal failure. Her balance isn't good, either.
She was combative in the hospital, but I think that is decreasing now.
The plan is to treat the kidney problems and, if she is medically stable, move her to a nursing home for rehab tomorrow. It is a nice facility, close to our home, and we will have the option of admitting her without spending months on the waiting list. I am thinking that is what we will need to do, as we just can't keep her safe at home. She has become very stubborn over the last few years; I would never have thought that of my mother. Her balance is poor and her arthritis is worse, and we can't keep her from trying to get up and down a dozen times an hour. It is impossible to be sure she is safe, and my brother, who lives with her, has to work. In fact, he had apparently just called her and talked with her on the phone, and then she fell. We have a caregiver that comes in a few times a week, but we really can't afford any more, as we have to pay for this out of pocket, since none of the agencies in our town will accept Medicare payments.
I know many people here have gone through this, and I know we will get through it, but this is something I never really thought we would have to do. My dad died before he got to this point, and mom had been doing pretty well for her age and for all that is wrong with her, so it was pretty easy to not have to think about it. She has been saying that she wants to go to a nursing home when she is upset with us, but that has been more in the way of a threat. I know she won't be happy, as she won't be able to have her beloved cats and she will have to give up most of what independence she still has. But we can't ignore the fact that the falls are becoming more frequent, as are periods of confusion. Apparently she doesn't have Alzheimers, and she passes every mental status exam with flying colors, but in everyday, practical life she is forgetful and sometimes gets confused.
This is a hard journey for us. At 87, we know her days are numbered and for years she always used to say that she would rather be dead than go to a nursing home, so we don't feel good about having to do that. OTOH, my brother can't manage her at home anymore, and keep his job, and he has to work. I'm 500 miles away, and I know he resents that I am not living there to cope with all this, because he would dump the whole situation in my lap if he could. I feel guilty because I can't be there to take care of things.
Guess I've rambled on enough. As you can tell, I am trying to dump a load of guilt somewhere. I know I'll resolve it, but I don't like having to go through it. I've had some other things on my plate lately, and I'd really like a breather. My brother complains about his nerves and that he can't sleep, and his dr. gives him prescriptions, and his boss gives him time off from work. For the same complaints, my dr. asks me if I'm eating too close to bedtime and my boss keeps calling, wanting me to work more hours. Guess he thinks that if I'm busy I won't have time to brood.

[Gardenarian]

Dump away, godess! That's what we're here for. I wish I had some advice; I'll send some positive vibes your way.

My mother died two months ago and I felt the Drs. dragged it out much too long. Honestly, if she had been my dog, people would have been telling me I was cruel to keep her alive.

I'm 53 and it seems all my friends are going through these end of life scenes with their parents. One thing - it is making me really plan for my own old age. I'm not leaving my daughter to deal with it.

(((hugs))))

[axis9313]

I'm confused because you said the nursing home is near to "us", but you're 500 miles away and your brother is burned out and would like to dump it on you.

But anyway, a person can have dementia without having Alzheimers. The personality change and forgetfulness is a clue to this, although some of that could be due to the UTI.

If they're falling, it's time for 24/7 care of some sort. What we did with my dad was have 24/7 home health care workers until we could find a good nursing home. Like you're saying, it's very expensive and out of pocket.

Unless you have unlimited income or several siblings who can share the care, the only answer is a nursing home. Some nursing homes are a lot better than others. You said it was a nice nursing home, and she can get in right away, so that sounds like a no-brainer to me.

Good luck. It's all very stressful and you wonder if you're making the right decision. Be sure to take time out for yourself so you don't get burned out.

[Blackdog Lin]

Thoughts hugs and prayers going out to you. (Seriously, here's a little prayer for domestic goddess: ........okay, sent heartfelt into the ether.....can't hurt and it might help. Did what I could.)

Hate that you have to go through this. Been there.....and I was far too young to do a good job with it. I have guilt to this day. But you can only do what you can do.

Agree with the above posters that you must take care of yourself too during this stress. I spent two summers crying in my closet (to hide the stess from DH), a better way would have been to try to share everything with the family. and come to a work-sharing agreement that didn't put everything on my shoulders. I didn't handle things very well. I only did what I could with what I had at the time, but should have hollered bloody murder for some help with what we were all going through.

Wishing you well with the situation domestic goddess.....(and I'll send another heartfelt prayer into the ether tonight.....)

[Lainey]

Any way you can discuss this with a geriatric social worker? they know all aspects of this scenario and could be very helpful. Also I'm sure you've searched the web, but don't forget the federal Area Agency on Aging, which has offices in every state if I'm not mistaken.
In situations like these it's best to get expert advice. But I agree, feel free to vent here - it's a very tough thing to go through. Best to you.

[Merski]

I'm sorry to hear your distress. Ditto on the Social Worker evaluation. Hugs.

[Mrs-M]

Heartfelt prayers your way, Domestic Goddess. Don't forget to take care of yourself, too.

[JaneV2.0]

Confusion in the elderly can be a result of too many medications, or interactions between two or more. Most seniors (people in general in this country) are way over-medicated, IMO. Dehydration is another possible cause for confusion, as is low blood sugar. Frequent falls can be a sign of low blood pressure, as postural hypotension causes dizziness/near blackouts with rising from a seated position. Likely caused by knee-jerk prescription of BP drugs.

A good assisted living facility would help get those things straightened out, along with making physical therapy available. (I tend to think "good nursing home" is an oxymoron, having gone through the drill with my own family.) I hope your mother manages to outlast her poor cats before she has to go to one, though. Sad business.

[mtnlaurel]

((((Domestic Goddess)))) - Hugs to you!!!

I was the de facto point person for my Grandmother's care from across the country while I was in the process of having my own children. Not easy and very heartbreaking.
My dad, an only child, who would do anything for his mom just doesn't really have a common sense caretaker bone in his body.
Didn't mean he didn't love her, didn't mean he wouldn't do anything in the world for her that he could do -- Buy Anything, Drive her Anywhere, Win over healthcare professionals to see Grandmother as a person
But when it came to the nuts and bolts of
-here are the ways we need to reconfigure her house so she can stay in it
-here is her current medication list, here are the results when this is tweaked
- here are the practical clothes that an incontinent woman needs and going to get them
.....and making sure my Depression Era GM didn't reuse her Depends when she couldn't really tell they were full :(
-advocating on her behalf with dr's and telling them NO, We want a second opinion -- Just getting records shared was a full time job!
-fighting to get the longterm health care policy enacted that she had paid for
on & on & on

And to include: Delegation "Dad, You need to do X. Here's how you do it. Call me when you are done. Love you!"

At some point, I just had to go into Project Manager mode and approach as I would with my work
I couldn't get bogged down in the emotions, the unfairness, the whateverness of the situation, I just had to DO
Her decline was not going to wait for me to do indepth ACOA inner self-work or why I married someone that doesn't see value in living near relatives
(and that is a judgement statement for my husband only - a detail that we did not work out on the front end of our agreement almost 20 yrs ago and is biting the hell out of us now..... It is in NO WAY directed toward others on this board - I so understand that we are all on our own journeys and I am not in lifelong, binding commitments with fellow boardmembers ;0 )

Here are some tools that helped me during this time:
- An excel spreadsheet for medicine start dates, doses, coinciding with physical conditions*
*pharmacologist in the family would be the most helpful, as JaneV2.0 notes reasons above ;)
- getting medicines filled at the same pharmacy so they can do print ups of meds for you
- Getting her to a Geriatic specialist general practitioner (one who is not retiring soon)
- We didn't do this because I didn't really know about it and she was a little too far gone when we finally did know about it -- Senior Daycare
- Assisted Living facility with multiple levels of care including memory unit
- POP IN visits
- knowing chain of command at facility and how things really happen
- Attend patient care meetings when all head members of staff review case when you can
- Type up loved one's life story on 1 page and laminate by bedside, family names, profession, previous hobbies along with photo collage
---- so nursing home staff can see her as her whole self, not just her current incarnation
- I couldn't do this, but my dad could and did -- hand out $5 bills like candy
- Do what you can do - smiles and thanks to all caring for your loved one, a homebaked treat, getting to know them as people
- Get familiar with hospice early on, it is an amazing resource to call on when you need it

I am sure I could think of about 20 other bullet points if I had the time.

And all of the above was possible for my GM because she was the embodiment of Simple Living - for all the sh*t life dealt her, she made a beautiful life for herself, invested wisely and scrimped in lots of places and splurged in just a few
She was truly my rock star and I would have done anything to make her final phase of life peaceful

DomesticGoddess -- wishing you sanity & some moments of peace as you navigate this minefield
And UTI's made my grandmother go bananas -- so maybe once that gets under control a bit you can see what you are really dealing with

[domestic goddess]

Many thanks to you all for the shoulders to cry on and thanks especially for the prayers!
I'm sorry for any confusion I may have caused. You're right. I do live 500 miles away, but I will always consider my little hometown "home", and our little house "home", so when I say the nursing home is close to our home, I mean it is close to my mom's home, which is where my brother now lives.
We are still working on the financial arrangements. My dad, bless his heart, grew up with very little, and the appropriateness of some kinds of finanacial arrangements escaped him. He took out long-term care insurance in the 80's. It was never updated, and when I called a year ago to find out about it, I was told that because of my mother's age, we couldn't do it. We would have to cancel the policy and attempt to take out another one, at a much higher premium, and it may not be approved. She has a comfortable monthly income, for her it is comfortable because she has few wants, and there is always the house that can be sold if need be. She also has some money in a retirement account and another investment account that we can use, and the home is going to see if she will qualify for Medicaid. All the financial arrangements are so timeconsuming and draining! I could contribute something towards her care, but my brother cannot. At any rate, Medicare will take care of the immediate future.
My mom has spoken of wanting to go to a nursing home for months. Now that it is a fact, she cries, begs to come home, accuses of of wanting to be "rid of her". Of course, none of this is true, but it is interesting how she has made the change. Actually, most of the time, she doesn't recognize my brother, doesn't remember she has children, thought my niece was me and cussed her out, babbles, sings, and does little that you would expect an alert and rational person to do. My brother goes and helps her with her meals, although there is plenty of help in the home for that. She can still come home after 20 days of rehab, if they think she is able. I have doubts about her ability to cooperate with therapy now. And she has had physical therapy, balance therapy, speech therapy, and has really shown no improvement. The speech therapy was because she was having some trouble finding the words she wanted, but they found no real problems, other than the amount of forgetfulness you would expect of an 87 year old.
Still, right now, I don't see things getting much better. I can't get down there right now, because there are problems here that have to be dealt with, though I would go if there were an emergency. The last labs in the hospital show that the UTI is clearing, and I hope her kidney function is improving, too, though it takes a little longer to be able to see that in the labs. Her balance is poor and she doesn't help it be jumping up half a dozen times an hour to get something, instead of letting others help her. Last time I was down, she told me she didn't want me to come and take care of her again because I wouldn't let her do things. I couldn't get her to understand that I didn't want to see her fall, but I am more that willing to let her do what she can in a seated position. I worry about her cats. 2 of them are older, and I doubt that we can place them anywhere, 2 of them were feral and have bonded with her; they barely tolerate the rest of us. The fifth one is a beautiful cat and I'm sure we could find a home for him if times were better. Th

[razz]

You are making progress through this difficult stretch in your life. Parents (we forget it could be anyone else as well) are a load when so much responsibility falls on others who have full lives and obligations of their own.

[Blackdog Lin]

Oh honey, your latest post just brought me back to where I was 10 years ago. I feel so bad that you are going through this, having been there.

There's the finances, and then the living arrangements, and then the former living arrangements, and then the insurance, and then the.....and the doctors and therapists are changing their minds every day on exactly what Mom (or Dad) can do for themselves, and what is the best living situation for their condition, and here's where you can go to help pay for it, but if you have a tiny bit of money too much you can't quality for THIS, but maybe you qualify for THAT.....

It's madness!

Sending thoughts and prayers again to you as you go through this.