Playing Stupid Hospital Games...

[mattl]

Looking for some advice from others here who have been through the process of caring for the elderly. Some of you are aware of all the "fun" I have taking care of my 94 y/o father.

At this point I'm frustrated not sure what to do. Back in early Nov he broke his hip and had a partial hip repair. He spent 2 1/2 weeks in rehab and came home zipping around with his walker aiming to switch to a cane. He has some balance problems, may be related to his Lamictal - not sure yet, but he fell several times. The last fall was the week before Christmas. I did not think too much of it, he was going to bed and fell in his room on the carpet, he's fallen on hard tile floors with out a problem. The next day he could not get up or walk. Call ambulance, went to ER, X-rays no breaks. Sent him home with pain meds. Spent a few days in bed but since then he can hardly move. Repeated x-rays, no issues, told it's just a bad bone bruise and he'll have to tough it out. Not moving much he's lost all the muscle tone and his appetite is not there and he's lost 10 pounds, down to 113lbs. He gets phys. therapy 3 time a week, but now has trouble standing. Luckily when he heard he weighed 113 he got scared and is eating more.

My issue is I want him to get back into rehab and get back to where he was 6 weeks ago. It seems impossible to do. The hospital rehab will not accept direct admits, and there is no way I'd send him to a nursing home. His Dr. said today if he went he'd be dead in 2 weeks, whereas he might have 2 or 3 good years left at home. His Dr. is not much help, I was hinting around for him to admit him and then get him into rehab, but he was very angry with the Ortho guy that treated my dad, another long story, and said it's really his problem. He said take him to ER and try and get them to do a CT to see if something was missed, and maybe they'd admit him. Big help.

So how do you play the game and get him what he needs? It's been 24/7 for me for 3+ weeks. I'm tired of cleaning up urine accidents on the carpet and furniture, I've never used the steam cleaner so much. Dealing with urinals, condom cath's and potty chairs is wearing, not to mention helping him up every 20 minute so he can go. It would be a lot cheaper if the insurance company would provide some in-home care, but they'd rather pay for a nursing home. He gets depressed and says he'd like to fall down the stairs and get it over with because of the pain and aggravation of not being able to get around on his own.

I managed to get out New Years day and see a movie with a bunch of my cousins, but I got 2 phone call during the movie and was yelled at by my dad for not being home -- my brother was there but that wasn't what he wanted. It was hell on Sat., I really paid for the 4 hour break and again on Monday. My brother suggested getting somebody in on a regular basis so he gets to know them and is comfortable with them. My replay was "He doesn't know you?" He did not have a good answer for that. I'm getting burned out. Not getting anything done, just exhausted.

He needs rehab and I need a break, just don't know how to make it happen.

 

[SactoTeddyBear]

Sorry to hear Matt:

Hi! Matt, I don't know if you have available back there, what we have here, although I would imagine you do. It is "IHSS" In Home Support Service, which you can request someone who would be Paid to help out, with taking care of your Father. You can even hire yourself {I realize that your worn out} but it might be worth it for the extra Income. The Amount Paid is figured by the amount of Monthly that the person {your father} has coming in and the Pay at least here is Minimum Wage. You also can qualify depending on the needs of the person, of the number of hours that you can work per Day/Evening.

If hopefully your Father would agree to this extra help and if he is able to Answer any Questions about his needs, the person needing extra help does need to Answer the Questions, but they can also have a Relative be there with them, to help with Answering the Questions.

I worked for my Life-Partner Gary, for several Months before his Passing, at approx 1/2 coverage of hours and the last few Weeks before he Passed-Away in January 1999, I qualified for 24/7 coverage of helping him and my Income. They have a Time Card here that you fill out and the person and yourself or whomever will be the Care-Giver Sign's the Time Sheets. Here the Care-Giver's get Paid every 2-Weeks and since we live down the Street not far from the "IHSS" Building, I was able to take my Time Cards directly into the Office, instead of Mailing them in.

The Care-Give Employees here work through the County, but they are Paid through the State here.

I hope that this Suggestion helps you to get some relief for you and hopefully even someone else {maybe your brother} to become the Care-Giver, or even you looking into becoming the Care-Giver. If you have the time to do this, it is at least some extra Income, if you have some time to spend and getting Paid to help your Father.

Peace and Kind Regards, Steve

 

[aldspinboy]

Matt ...i have had the almost the same situation with my grandmother it is very stressful. She finally let us have people to come and help and it changed the way she was thinking because we had great help from this wonderful woman who used a more alternative system more holistic method.
I hope you get the right support for yourself as well.
Please be well... i wish i had more for you, peace to you .
Darren k.

 

[toggleswitch2]

Light, love, peace and blessings to you!

May you have patience as well.

You have a place in "heaven" for what you are doing.

 

[polkanut]

Contact your local aging and disability resource center, they may be able to refer you to the kind of help you need.

 

[whirlaway]

A place in Heaven????????

You and your brother get together on this before you have a breakdown.It is not easy caring for other indiviuals.After awhile you get the BabyJane syndrome.Tell the Doc you need help and NOW! Good Luck to you. Bobby

 

[panthera]

Matt,

My deepest respect and sympathy for your situation.

You've gotten some good advice here, I will only add one thing.

You are doing your best. More is not possible than that. I hope you get some relief.

 

[jmm63]

Hi Matt, My Mom lives in the Downriver Detroit area and I just got back from 10 days of helping out. She was in the hospital for 4 days and then went to a rehab center to help regain her strength and mobility. Prior to that, my sister was caring for her at home. My Mom has HAP insurance, which was pretty good at providing in home care prior to the hospital. We had a PT person 3 days a week, a visiting nurse twice a week and a social worker twice a week. We also had "Visiting Angels" a couple times a week, all of this is to give the care giver a little while off to keep them sane. Its a tough situation to be the caregiver, I wish I lived closer so I could do more. Also, try your local church if you belong, sometimes they have parishoners that will visit for an hour or two so you can tend to your needs. Hope this helps.

 

[petek]

HI Matt and sorry to hear about all the troubles with your dad. There just has to be some organizations out there that can help you out for sure that you just haven't heard about. Maybe one of the social workers at the hospital / rehab would have info. The ones who are supposed to meet with the patient and family before they go home. This is exactly the sort of thing they're supposed to prepare you for and lessen the burden.

 

[danemodsandy]

Hospice:

Before you become overwhelmed, you should check with a hospice company in your area. Hospice care does NOT mean someone's going to die right away; it means that they are getting to an end-of-life stage, with decline in their health and well-being.

A hospice company can come out and do an assessment, and they will help identify program resources that will pay for their services, like Medicaid. They do this all the time, it's not an imposition on them.

When my partner was ill, the hospice company we had was the biggest help you can imagine. They furnished his medications, oxygen, adjustable bed, walker, Depends, wheelchair, raised toilet seat and many other items. We paid Not. One. Penny. The company got its reimbursements through Medicaid.

They also provided what is called "respite care," where the patient goes into an inpatient facility for a few days while the care provider gets a chance to sleep and catch up. They were able to provide bed baths at home (though my partner wanted only me to do that), chaplains for pastoral counselling, a visiting nurse at least once a week, and more.

I urge you to look up hospice services in your area. ManorCare is one big one, but there are others. Hospice is NOT about dying, it is about quality of life when someone is declining towards the end of their life. And not just the patient's quality of life - yours, too.

 

[danemodsandy]

P.S.:

Do not continue to try to do this alone. You cannot possibly keep doing it alone. Take it from someone who's been there, done that - you will barely be able to do it with help.

My partner died in June of last year, and I am still exhausted.

 

[jakeseacrest]

Matt I'm so sorry to hear about your situation. Everyone here has some good advice especially about the hospice care. I work in an ER and do see alot of this with family members taking care of loved ones. About the doc....get a second opinion. Obviously there is something wrong with your dad that this doc is not seeing! Contact his insurance company and find out your options. They may be able to set something up with rehab, physical therapy, or even getting a part time nurse or home aide to help you out. Good luck and take care of yourself. You are no help to your father if your health and emotions start declining.

 

[volvoguy87]

Long term care insurance?

My grandmother was the same way. We used an agency called Home Instead which provided 24/7 care in the house. They also do less, it just depends on the needs of the person needing the care. My family lives 2 houses down the street from my grandparents, but my mother (who was the primary caregiver for YEARS) was not home much. It is indeed very trying, exhausting, and hard work. Contact your local center on aging/senior center/social services board and inquire about in-home senior care.

DO SOMETHING so you won't look back on this time with your father and cringe. It will be good for your sanity too. You need your own life, or at least a break.
Dave

 

[danemodsandy]

Practical Tips:

1- Never miss a chance to sleep. A patient's needs can deprive you of sleep for several - or many - nights in a row.

2- The hospice company will have a social worker assigned to you. Get that person to assess financial stuff, like wills and insurance. Make absolutely certain they do this. The biggest mistake I made was failing to bear down on this; my partner was always like, "I'll get around to all that." Well, he died suddenly, and nothing needed was in place. Cost me every last penny of my savings, and more besides. Don't let that happen to you.

3- Eat. Eat. You need a healthy diet to stand up to what you'll be doing. The patient needs the same thing. One problem will be that many medications make food taste funny, so the patient often turns into a picky eater. Keep careful notes on what they'll eat, and what they won't. Patterns will emerge, like when they take this, it makes that taste weird. It's a huge help.

4- Dreft laundry detergent and Oxy-Clean are your friends. Dreft is sold for cleaning diapers, meaning it can remove the kinds of soilage you'll be dealing with the most. It's not easy keeping up with clean sheets and pyjamas; these products make it easier.

5- Do not worry about what the bedroom he's in looks like - arrange it for his comfort and safety, period. I had to re-arrange my partner's room so that he didn't have anything to fall on to. When he had his first fall, he missed hitting the corner of a TV stand with his head by inches.

6- If he has any kind of sleep or pain medication, you should be the one to give it to him - do NOT allow him to manage it himself, no matter how much he complains about you "taking over." I have seen two cases of addiction - my grandmother and my partner - result from this, and getting control back was an absolute booger in both instances. This is so important that you need to be willing to tell both patient and care providers that you're not willing to keep providing your services unless it's done your way. Period. My partner's life was shortened by his addiction to benzodiazapines prescribed by his primary physician. By the time I figured out he was hiding stashes of that med and that they were the cause of his falls, he'd done damage to himself from which he did not recover.

7- If you have some friends who can come over to see you, it will be very helpful with that lonely, lost, overwhelmed feeling. You have to be clear with people that the house is not at its best, and that the patient may interrupt, but good friends won't care. You need people. In-home care is one of the most isolating things you can imagine, as you're finding out.

8- There will be times you have to set boundaries with both the patient and the care providers. Don't be afraid to do that. Patients may want you to come running to fetch something they could easily reach. Care providers may want to set up visits that cut into your sleep (patients are typically up a lot at night, then sleep during the morning, which means the only time you can sleep is during the morning. Care companies are notorious for wanting to make nursing visits at eight in the morning). You have to be tough.

9- This used to tire me out a lot, but any time I got a break because my partner was in respite care, I always started it by cleaning, disinfecting and airing his room, something that was almost impossible to do when he was home. Then I would collapse. Someone who's seriously ill can make messes no normal person would believe, as you've seen.

None of this is simple. Just try to take care of yourself, is the main thing.

 

[danemodsandy]

Oh, One More Thing...

...I don't mean to dominate this thread, but one thing that helped a lot with the picky eating was gravy, particularly chicken gravy. Tomatoes tasted metallic to my partner, but chicken gravy usually did not cause a problem. When he first got ill, he lost a lot of weight very quickly; the hospice people were very concerned about him. I put twenty pounds back on him, and he lived another two years. I also used to give him smothered pork chops, with gravy made by using equal amounts of Swanson's beef stock and chicken stock. He used to say it tasted more like pork than pork did.

Gravy good. Very high in calories, and that's what an ill person often needs. Also easy to eat, and makes bites of meat go down easier - we used to joke about it, calling the gravy Food Lube.

 

[danemodsandy]

HCR Manorcare in Flushing:

Heartland Health Care Center-Briarwood: Fostrian
- www.hcr-manorcare.com
540 Sunnyside Drive, Flushing - (810) 659-5695

Heartland is the name under which ManorCare runs its hospice operations.

 

[jeffg]

> I managed to get out New Years day and see a movie with a bunch of my cousins, but I got 2 phone call during the movie and was yelled at by my dad for not being home -- my brother was there but that wasn't what he wanted. <

Matt, that's absolutely outrageous, but unfortunately it's also typical. When people get that old, many or most of them become extremely bitter and demanding, and they have no problem with making family members feel like they're not doing enough, regardless of how much is being done for them.

If you allow your father to get away with this, you're setting yourself up for a lot of grief and resentment. Make it clear to him that you're more than happy to clean up his urine, but in order to avoid going completely insane you require a certain amount of time to yourself every week. And stick to it. Next time you go see a movie, leave your damned phone at home.

 

[maytagbear]

I went through something very

similar with Ma, and I can't improve on most of what's been said here.

However, in my experience, I let her needs and demands chip away at my life. There were only five places I regularly went in those years: supermarket, bank, pharmacy (a local, independent that DELIVERED- a lifesaver!,) library, and my Twelve Step meeting.

Try not to let that happen to you.

Get all the help you can, from any trustworthy source. We had a marvellous cleaning lady then. She loved Ma, Ma loved her, and I could ask her to "sit" every now and then. I often would run my errands while Diahn was there. I'd give her an extra ten, and it was worth it.

I did not have Internet/email then, would have loved it. Oh, and keep your vehicle(s) in tip-top shape. You never know.

I would do it again, in a heartbeat, but I'd be smarter about it all, and less reluctant to trade money for time or for hands. A Stouffer's meal or a bagged salad is not a crime.

Lawrence/Maytagbear

 

[aamassther]

Matt,
My partner has come across many of the same issues while helping his mother in Flint. What healthcare system are you using? My partner's mother is in the McLaren system. Being used to Ann Arbor's system, we've found it challenging at best. I would suggest speaking with his case manager at the hospital. There are options available.
His mum was admitted for rehab to Durand health care centre, twice. She returned to her senior apartment after both admissions, with some assistance there. I'm surprised she returned home, but the care she received at Durand really is oriented to rehab., rather than comfort.
She's currently living at American House, this has really helped with our sanity. She's able to be independent, have people check in on her, we are able to add and subtract services as needed and she get's her meals
My partner and I would be happy to have coffee or something with you, it always helps to have someone to talk to about the frustrations, etc.
Sounds like you need a massage! I hope you can find peace in your stressful time.
Best wishes, Todd