[mombottoo]

I have been a caregiver for a very long time, afterall I am a mom which is a form of caregiving. But, the caregiving I am talking about here is not the kind that moms give to their children while they are raising them, but the caregiving we give to people out of medical necessity.

Many of you know that my youngest son/child suffered a traumatic brain injuy several years ago. I am his main caregiver and the last several years have been like riding a roller coaster.

Now, my dad (70) is running into major medical issues and as the eldest child the majority of his care is falling to me. I am so stressed I can barely think, much less function and it is really getting to me. My dad has said/done some things recently that make me just want to throw in the towel and leave him to his own devices, but the daughter in me knows that if I do this he will die. Any suggestions on how to deal with a person who has been labeled as "non-compliant" with his meds etc would be very helpful...I am at my wits end.

 

[leezza]

:hug2:

Wanted to send you a hug.....

I am thinking about your dilimea and thought maybe you could get an appointment with his doctor to ask what things you could do. Also ask the rest of the siblings for some assistance.

Can you talk to your Dad?? Does he realize how hard this situation is on you?? Maybe he doesn't realize how hard his being grumpy is so hard on you. Does he have any friends that he could keep in touch with???

Take care of yourself,
leezza

 

[zakity]

:hugs

Sorry... I couldn't do it. Kudos to you...

 

[FrugalWitch]

No advice but loads of empathy. Non-compliance could be my Momma's middle name.

I can get her to take her meds (it's the twice daily argument/fight/drama), but doing her exercises/PT, eating, getting her to actually do anything that she's capable of for herself....forget it.

My thoughts are with you.

 

[kaurand554]

I just started working in the field of a home health aide. I know nothing about how it is funded or if insurance covers it....

But I go out to people's homes and spend some time with them; reminding them to take their medicine, cleaning up kitchen, even cooking breakfast, lunch or dinner for them.. a load of laundry....etc

some clients are not easy . But I think they are less "vocal" if it is someone else helping them....

Just a thought. If it is covered by insurance... why not save yourself some frazzled time... and let someone else be the bad guy.

And we get to know them and really care about them... it really is not a stranger.... in a week or so..

Again not sure how insurance works for this... but if you arrange it, you can even manage it... also may be able to get some help for you and your son....


And then here is a big ((((HUG))))

Just a thought!

God Bless....

 

[cissylu]

Hugs , you need help. take care of your self.

 

[Nishu]

Have you looked into some kind of local support for caregivers? Don't be afraid to ask for help or someone to talk to.

When my stepdad was sick, we cared for him ourselves (mostly my mom and me) for about 8 months before we finally decided to let hospice come in and help. (His daughter didn't want him to think it was okay to 'give up' so she didn't want hospice to come in, long story.)

Anyway, just having them come in made a world of difference for us. They totally understood what we were going through and had a ton of fantastic advice and guidance during that time. If I had to do it again, I wouldn't do it without support of some kind.

Good luck, I hope things get better for you.

 

[hunertime]

Can you ask your siblings for help? You have to make sure you care for yourself also, maybe respite care to give you a little break.
God's blessings on you and all you do!

 

[mombottoo]

Thank you for the hugs and the ideas. My dad isn't terminal, so hospice isn't an option. He's starting to have memory issues and the doctors are starting to use the terms "beginning stages of dementia"...which would be totally possible given his paternal aunt had severe dementia (alzheimers (sp)).

He is a diabetic (insulin 2x a day) and recently was hospitalized for a blood clot in his lung, atrial fibrillation (heart was pumping correctly) and a blood sugar of 588. They discharged him after 4 days for throwing a temper tantrum over a stress test...they left him alone for what he felt was too long and he lost it and refused to take the test. This was a couple of weeks ago.

Last week hubby & I left for a few days for our 32nd anniversary (plans had been made for awhile) we left late Wednesday evening and were due home Saturday evening. I left my sister a list of exactly what needed to be done for dad while I was gone. Friday about 6p.m. I got a call from my daughter, expressing great concern for my dad's condition...he was slurring, etc., he cancelled his doctor's appt...so hubby & I packed up & came home. I went & checked on my dad & ended up running him into ER. His medication levels were way low, he had a blood sugar of almost 600 (again) and his legs were swollen up into his knees. They ran a crap ton of tests and ended up telling us he was in the shape he was in due to non-compliance with therapies (medications) and told us there was absolutely nothing else wrong with him. They got his blood sugar down to below 300 and gave him 5 mg of coumadin and released him. They made arrangements for visiting nurses to come in and the first visit was this past Sunday.

Now, yesterday he gets a call telling him to come back to ER...something showed up in his testing afterall. Pneumonia and a bacterial blood infection (source unknown)...so I take him back to ER and they kept him. He's in the hospital as I type, had the stress test today, they've ran bloodwork up the yang and had him on an insulin drip. Once they removed the drip and allowed him to eat his sugar shot up to 317 even with insulin. His legs are getting so big they look like they are ready to pop and he is beyond cantankerous.

We already knew he was going into heart failure and his primary doc prescribed lasix and potassium pills...which means now there are more pills for him to forget. There isn't any reason for him to forget his pills, they are divided in a case by day and time to take them. All he has to do is open the spot, put the pills in his mouth and swallow for heaven's sake. His insulin is another issue, I really believe that he thinks he is taking it...but, I don't think he is taking it correctly or his blood sugar wouldn't be going so haywire.

I also know that alot of his behavior is because he is scared. He has always been able to take care of himself and now he's losing that ability. His companion is next to useless, mainly because he can bully her into doing things that shouldn't be done...like bringing home bakery glazed donuts, ice cream and oreo cookies. Having a treat once in awhile is okay, but to pig out is a definite no-no.

I'm going to call Senior Resources and see if they have any suggestions for when he gets out. I know I can't do it alone and he absolutely will not listen to either of my sisters...or anybody else for that matter. I was thinking of asking if vns can come out twice a day until he is healthy enough to take control again...if he can. If not maybe SR will have suggestions for getting an aide to come out & help him. All I know is that if he gets himself kicked out of the hospital, before he is healthy enough, I will put my foot up his backside....

 

[Patty A]

My heart goes out to you. And I know you need support and HUGS! I have spent the last 25 years taking care of my mother in law. No help from other family members at all. In July of 2007 she fell and broke her leg. She had to have PT to gain the use back in her leg at least 2X a day, and couldn't be left alone at all. It meant the nursing home until she was well enough to come home. My brother in law decided she wasn't coming home! (she lives right next door to us!) He decided without telling anyone else in the family that she would be going to his house. Well what a relieft it has been for my family, and the nightmare for them has been going on for the last year. It is the first time since her husband died that they have had her full time. My family has decide since they wanted it, they got it. They have never helped us deal with her at all, so now they have it full time. The only reason I am telling you all of this is to let you know that the nursing homes have a "day care" where they take your family member during the day so you can have a break. They do all the meds, meals, and care. You can drop them off for the day, or just for a few hours. It may really help you have some time for YOU to look in to programs like that in your area. You have to think about you, and I know for a fact that is very hard when you have all the care to do for you dad. You also have to remember that there is only so much you can do, the rest is up to him. You won't be any help to anyone if you get sick from over doing things, take it from me I know how run down you must be. That kind of care is the hardest thing there is to do, and when the family member decided to be stubborn its like beating your head against the wall. Please don't let this drive YOU in to the ground! And it will if you don't get some help. Please check out you local area for "adult day care" and see if they can't work it out to where you can have a few days to call your own without all the worry about your dad.

Sorry this is so long, but I do know how you are stuffering. You have to take care of you, as no one else will. You family at home needs you, and they need you well and happy. It really does take a toll on your health, so please be careful and don't let this take YOUR health trying to help someone that doesn't want the help. Please take some time for you. You need it!:hug2:

 

[PrairieRose]

I really don't have any suggestions other than you might want to seriously start looking around for a home for him..... . It sounds to me like you already have your hands full with your son's condition and needs. You can't possibly give your dad the type of care he needs 24/7 as well as your son. My dd is 79, living on his own since my mom died. He doesn't like the foods we eat nowadays (we've changed our eating habits to more healthy food...he likes fried everything) and won't eat leftovers so I can't cook for him a couple of times per week and freeze things and him eat it. It's a real problem. Anyway I really, really feel for ya. I hope you can find a workable solution but remember you're only human. :hugz:

 

[Goodwin17]

:hugz: I don't have any advice, but through working in the medical profession I understand how stubborn people can be. I hope that you are able to find some help. Be sure to take care of yourself too. It is soooo easy to get caregiver fatigue.

 

[macemesmum]

Hugs and prayers to you, i was my dads primary carer for 12 months while he battled cancer, it was so emotionally draining, many times i wanted to give up,but i just couldnt put him in a home, i was lucky though my dad was so mellowed and sweet and i treasure the time i had with him so much. You cannot get it back later. I dont think its fair that it all rests on you can your siblings help especially given the care that is required for your own child. do you have something called silver chain in america here is aus they came in every day and bathed my dad as he was in awheel chair they also helped me sort out his medication and provided a special bed for him at our house due to the cancer in the spine, i wish you all the best and hopefully you can find some help for you and remember take care of yourself as well.

 

[mrsfoamy]

It's such a curious thing to me that the aggression comes with the dementia.
I hope everyone is hanging in there!
I know it's a roller coaster ride.

 

[cab54]

I am getting (right now) my first 6 months reprieve from taking care of my dad's needs. DH retired and we are up at our cabin. Ready to go home in a couple of weeks.

When I'm at home (in Ohio), I clean my dad's apt. as well as my house (he will get thrown out of his HUD apts. if it gets too dirty), and bring over food (he also gets meals on wheels, but he hates them), and make sure he's taking his meds, and do his laundry, and go to the store for him. One of my sisters is caring for him right now. Bet she can't wait till I get back! LOL!

He is also diabetic (in denial--"I don't need those meds!"), cantankerous, and I often find a HUGE hershey bar :choco: or something on top of his microwave, half eaten. He takes his wheelchair out and goes to the store that is just a few yards fom his house. I don't say anything. No point.

He can barely get around due to no circulation in his feet and a long-ago work injury where an air conditioner fell on his feet. He hardly ever bathes, although sis and I try to subtly drop hints. He does have a shower, with a seat I bought him, and lots of handles to hang onto. Sis and I are wondering what to do when it gets to the point that we have to bathe him. I'm thinking nursing home.......

I don't have the problem with nursing homes that some people do. My dh's family has run a couple of them for years and they are extremely fastidious about how it's run. Clean, clean, clean, lots of activities for the residents, etc. My dh's own grandmother went there and had a blast! She loved the card-playing and bingo etc. She was lonely at home.

That said, I think the BIGGEST problem my siblings and I have with helping our dad, is------that he was a terribly crappy father. He left our mom (for a 19 yr old)with 5 kids, hardly EVER paid child support, drank and was abusive all the time, He was just a horrible person. I have a few fond memories (pre-booze) from when I was very young (I am the oldest too!) but my sibs can't even remember when he wasn't a creep. So, we rise to the occasion and care for him because he is our father, but it brings up a lot of ambivalent feelings. Sometimes when I'm scrubbing his scummy bathroom and he's telling me lies, and being generally a jerk, I want to just walk out. :shake:

DH and I are both 'oldests' and seem to get a lot of the load. I have had a great 6 mos up here--the best 6 of my life. I hope you get some time off soon. I'll be sending good vibes.

 

[Duffy]

Hello. I discovered this forum only yesterday, so I am not yet familiar with the proper-protocol for replying to threads dated earlier. Please correct me.

The word "caregiving" grabbed my attention. I shall spare you my "story"; but just want to suggest a wonderful site for information and support. The forum is "family", much as this one is...and there is no criticism nor judging.

Because I don't know if links are allowed here, I invite you to PM me if you are interested in finding people who do "get it". Some members there are dealing with the challenges of special-needs children...and mega-difficult elders. :yikes:

 

[mrsfoamy]

^Welcome^!
I caught a clip of a TV show yesterday that said some people are just natural born caregivers. Like some people are born to be guardians (police, soldiers, etc.)
I guess there's a reason we do it, and we do it well!

 

[monkeymia]

Firstly, hugs to you sweetie and I wanted to tell you that you are a beautiful person.

Caring for others with special needs is never easy and when the "patient" is hard to deal with or resents being cared for makes it 10 times harder. If you were going to take on caring for your dad full-time, is that any respite available for you? Even if its only 1 day a week/fortnight or month, you too will need time for you. You don't want to get burnt out as you can't look after yourself, your son or your dad if you are sick and exhausted.

Try to talk to his doctor, set up case meetings with key practicianers who deals with him, try to get all the doctors to work together so it is easier to manage all his conditions. I don't know if this is available in America but here if the patient has a "chronic" illness, the doctors will all work together.

My mum has chronic renal failure and also suffers from diabetes, high blood pressure problems and heart problems so all her doctors and specialist work together (share notes on consultations etc) as does the dietian, podiatist (foot doctor), Chemist etc. Is this something that can be arranged so you can get better care for your dad?

 

[rainbowgc]

It wouldn't hurt to look up guardianship in your state. Guardianship would give you the right to make decisions for your disabled family members.

 

[mombottoo]

Thank you all for the later responses, almost forgot I had posted about my dad. I have been very busy so I haven't been on much over the past few months. Have had a couple of blowups with dad over his lack of taking care of himself and then getting mad at others for trying to help him ex: keep track of his meds, etc. Have decided to do what I can and let God handle the rest. I love my dad, but it is obvious that I will end up not liking him if things were to continue as they were. I don't want that to happen so I have decided that there is no sense in trying to control something I have no control over and that is my dad.

I have guardianship over my son and under the circumstances my son comes first. I have suggested that one of my sisters seek guardianship over dad, but neither of them is willing. So we will just play it by ear from here on out. Thank you for your words of support & understanding, you have no idea how much they mean to me.