Hey All,

Really sorry it has been such a long time since my last update, but I have been reading along the way.

Also sorry that my first note in a while is on the Anger Wall.

Dad has been progressing. There was an accident with his caregiver where he stubbed his toe and we eventually found out it was broken...he ended up with the top half if his big toe amputated, but he is physically doing better.

His dementia is progressing. For the last six months or so, he has been great. Much more child like, but easy to care for and get along with. Within the last two weeks tho, that is changing and he is back to being more aggressive and mean. He has screamed at this cg and looks to blame others whenever he has a problem now.

That, in itself, is tough, but my siblings are not helping at all now. Financially, physically, emotionally..it is all on me. This has been two years now and it is not improving.

I think that I am getting close to having to make the nursing home decision, but I am feeling so much guilt over that I am terrified.

I have taken people up on their offers of help whenever they come. I know that part of this whole thing is that I need to take care of myself as well...I am not. There never appears to be time. Now, if I want to go out with my partner, we need to weigh if going out is worth the $100 it costs for a sitter. And that cash comes out of my pocket. My savings is gone as we went on vacation this summer and it costs me over $1500 in caregiver costs to cover that alone...not including the fact that Dad's $ is not covering the caregiver and I had to shell out almost $1000 a month out of my own pcket for the past 6 months. We just cut the cg back to three days and my partner is working at home one day per week to offset the expense.

I just feel like I am floating alone on a river that is heading for a waterfall and I can't stop it. Dementia/Alz is such an awful disease!

SO, I guess, what my ranting is for is that I need some guidance...am I awful for thinking of putting him in a home? If I do it, or plan to do it for next summer, how do I start? Should I start looking now for next year? What do I look for? Can anyone direct me to any source that may help with this?

Paul

quote:

She now looks forward to the afternoons, when she plays Bingo and chats with her new friends.

BINGO, Thank the powers that be!

Studies have shown that socialzing in the elderly actually improves their health!

Hi, Paul. Rough road, isn't it? When the stress and exhaustion don't get you, there's GUILT waiting to pounce.

I hear ya. I took care of my parents, both of whom died in 2002. I managed to keep them home for about 8 of the 9 or so years I cared for them, but it wasn't easy and it wasn't totally by choice. It's a very long story and I'll spare you, but let's just say that it is SMART to recognize when you've reached your limitatons of caregiving and change the situation.

Nobody who willingly takes on the extremely difficult task of caregiving for someone they love wants to put their loved ones in a NH. I think we all want to keep them at home till the end. Sometimes the reality is that - for many possible reasons - it becomes no longer a viable option at some point. Of course we're going to feel guilty. My partner heard "Maybe if I'd just tried harder" along with other assorted guilt trips coming out of my mouth for a loooong time. As bad as guilt feels, sometimes it's just one more natural emotion on this journey - not really good or bad in and of itself, but to be expected especially when the welfare of someone's life is in your hands. The thing is... you cannot let guilt keep eating you alive. At some point, you must recognize that you are a human being, you did the best you could and - guess what - placing your loved one in a NH really was the best decision you could have made, no matter how difficult it is.

My parents needed more help than I could give them. That's the facts. It sounds to me like you've reached that point, too.

You have gotten some really excellent advice here. I hope it helps you get through this as smoothly as possible.

[Please Paul take the time to breath and answer some questions, this behavior, its new.

It actually is not new...it is cyclical...he got aggressive and angery before, but then was on a cycle of being in a better place.

Have you had him tested for a UTI?

I called his Dr and he didn't think it was a UTI, but I am bringing him in this weekend to get it checked

Have you changed meds at all?

Nope...same meds...he is on Aricept and Namenda...we actually had to reduce his meds a few months back because they weren't agreeing with his system, so I had to decide if the small bump in memory was worth the physical symptoms it caused and we decided it wasn't

If not can you?

He is on the minimum dosage of each now...we could see if taking him off entirely helped tho...

]

Thank you all for your input...it has helped a lot. I am going to begin the process and satart researching my options.

I really appreciate the kind words and directions...THANK YOU ALL

quote:

am I awful for thinking of putting him in a home?

No. We all have different strengths and resources -- I found that I was terrible at caregiving. It made me unhappy and it didn't provide my Mom with things she needed, like socializing and activities.

She's doing very well at a small (under 15 residents) assisted care home. She has her own room and bathroom, she gets assistance with showers and is served her meals in a nice environment. They are sure she gets her meds on time, and will even help get her to doctor's appointments. She now looks forward to the afternoons, when she plays Bingo and chats with her new friends.

Does she miss her old life and home? Sure. But a lot of what she misses is my Dad, who passed away, and her youth. No matter how much I want to, I cannot replace those by living with her. I feel that the assisted living home staff does much better than I ever did in providing her the things that can be done and that she does need. Now when I chat with Mom, we can chat and enjoy it, instead of both being stressed and tense and bordering on an adversarial relationship.

Folks here told me to look for a place with increasing levels of care. (Mom has Parkinson's.) That was a good tip, and her residence has that. As her need for medical attendance increases, she can still stay there, though the monthly rate goes up.

Oh I forgot Paul I dont know how much your dad pulls in a month if anything on SS or ??? Check with your Tax preparer to verify if your dad can be written off as a dependent I do this with my MIL on my taxes.

Another site mentioned this guide to health facilities, a sort og grading system bases on types of complaints.
http://memberofthefamily.net/index.htm

I only found it moderately useful because I know of 2 AL/NHs in this area that were not mentioned at all. Any how, click your state and look for homes in the area you are considering. Don't tie yourself too close to home though.

There are small personal places that fall under the heading of "board and care". BG and OP can tell you more. Those places might not be in these listings.

BG's hints are right on by the way. His current state of mind might improve with a "tune up". For your sanity and personal financial health, though, looking for placement is the right thing to do.

ABSOLUTELY NOT! You are not awful you shouldnt feel guilty.
Please Paul take the time to breath and answer some questions, this behavior, its new.
Have you had him tested for a UTI?
Have you changed meds at all?
If not can you?
Neurologist time my dear get an appt now if meds have not been increased or changed in a while it may make all the difference in the world for him AND you.
I think everyone here can tell you that it is expensive to take care of our LO's in home and with rising costs its no joke.
If this is breaking YOUR bank its time for change Paul because in the real world your Dad would not want you taking this on if this is what its doing to you
Also remember to keep all receipts from CG expenses, copays, ER visits, meds, anything having to do with the CG of your dad.
Its tax deductible.

We have a section here at the forum called
Residential Options
When the challenges of homecare become too heavy, a facility staffed by career caregivers may be an option. Ask your peers how they came to accept the transition.

You might want to read through the posts.


Medicare Nursing Home Information

http://www.medicare.gov/Nursing/Overview.asp

Paul, we've missed you around here.. Why have we missed you?? Because you are a marvelous and sacrificing child who has been above and beyond to care for your father.

OK, you are now thinking, but what about when I flubbed this, or didn't foresee that, or lost my cool with sibs, CGs DAD, snapped at partner. Yeah, since when are we Wonder Woman and Super Man, born with all the knowledge that we will ever need to take on the world and Caregiving. Often, we must make the decision, life being what it is, our loved one actually will be best served by seeking out the next level of help.

Believe me, it doesn't mean the job is over, honey, you will hear me sing before then. It is nevr to early to investigate options. I have always been looking here or there. Visiting different places, checking them out on the net. You really must start early, because often there will be a wait for a good place.

I am so sorry that your effort didn't mend the rift between your family members, but if any one gave it all they had, it was you. We are just not super heroes, only the garden variety heroes.

There is a lot of info in the hme page about picking a NH. Financial guidance also. I have to run right now, but we will try to help you find what you need if you have any trouble.

Hugs to you and your partner. Breathe deep and think positive.

Hey Paul... I have often said that I wish we had a "Wailing Wall" at ECO because I find I need that more times than I do an Anger Wall!!

quote:

I think that I am getting close to having to make the nursing home decision, but I am feeling so much guilt over that I am terrified...am I awful for thinking of putting him in a home? If I do it, or plan to do it for next summer, how do I start? Should I start looking now for next year? What do I look for? Can anyone direct me to any source that may help with this?

Paul, PLEASE let yourself off the hook!! One can only do what one can do to the limits of their ability - financially, socially, medically, etc. For many folks, the task you have ALREADY undertaken would have been so unthinkable that they would not even have attempted it! Caring for our parents does NOT mean going down the tubes with them!!

If you are feeling like your father's needs are outstripping your ability to meet his increasing challenges, PLEASE start shopping for a nursing home. Contacting them for tours and to sit down with their financial people and social workers will help you learn the "ropes." Nicer places frequently have waiting lists, so by all means, get on the lists. You have nothing to lose by doing so.

You will need to gather together his financial information, etc. so get all that in order. If he cannot private pay, then he will need to qualify for Medicaid and may need to "spend down" some income. Please look over the legal and financial forum and get with folks in your area (like the social workers, etc.) who can let you know how things work and what you have to do. Don't rule out getting some advice from an attorney who specializes in elder law and finances - might be money well spent.

I KNOW this is tough on you and y'all have done a great job, but there comes a time when we must accept help when the task overwhelms our ability to meet the increasing challenges. You are NOT horrible or anything remotely close to it! You are a loving son who has been dancing as hard as he can to keep up!!

Remember to B R E A T H E! Take it easy and realize that this is a tough issue for anyone who loves their parent! You do not have to take on the entire task in one day. Do a little bit of investigating each day until you have enough information to formulate a new plan.

MANY, many blessings to you and yours for all that you do on your dad's behalf. You are a rare person.

quote:

Originally posted by PRCT7777:
SO, I guess, what my ranting is for is that I need some guidance...am I awful for thinking of putting him in a home? If I do it, or plan to do it for next summer, how do I start? Should I start looking now for next year? What do I look for? Can anyone direct me to any source that may help with this?

Paul

Bless your heart. To answer your question, "No! You are NOT awful." And, imo, the time to start looking into various options is right now whether you choose to act now or not. Know what is available to you, how much it will cost, and so forth. That way you can plan.

In the long run, it could end up that dad is more content in the right facility. Certainly there are more social opportunities and activities. They are able to make the environment itself safe so that he will have more freedom to roam and do his own thing.

I spent most of last week at the hospital with my MIL. I can't tell you how many phone calls I got from staff members at her facility, just to see how she was doing. She's one of their longer term residents and although a combination of her personality and her cognitive disability prevents her from recognizing it, they are very kind and loving toward her. When she was wheeled back in from the hospital, everybody we encountered greeted her by name and made a fuss over her. She was just beaming from all the attention, and happy to get back to her "apartment." (We call her semi-private room an apartment. Makes her more content to think of it thus.)