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I'm feeling a little sad and scared today.  I'm sad to see how little life energy my mother has left in her.  She was once such a vibrant, powerful, energetic, and strong-willed person.  She's just going through the motions these days.  She doesn't want to go for a walk (with me pushing her wheelchair) through the neighborhood.  She says things like she doesn't want to go to the bedroom to put on her make-up because she doesn't want to see herself in the mirror.  None of her "friends" come to visit or call.  She's lonely and sad.  I can't help, but get a bit of the blues from being with her so much, lately.  I am saddened to see that no one comes to visit or even cares. . . How did she get to this place of being left for dead? 

 

The scared part is because a new home health agency came to do the intake paperwork for Mom's home health aides to begin coming each day.  I'm concerned they will be just like the psychos that we have had in the past.  How do I let go of this fear and just have faith?  How do I not let the past taint the present tense?  Will this agency let us down, too?  Will the new home health aide(s) be abusive and inconsistent?  Will I receive neurotic and psychotic phone calls in a few weeks because the caregiver(s) are providing shoddy care?  Will this be my existence and thinking patterns for the rest of the time I am helping my parents? 

 

Oh my ~  I'm just a little scared of the changes coming.  I can't keep doing what I am doing and make any progress with my own responsibilities.  So, I know change is necessary, but I have absolutely no control over what is about to happen.  I suppose I just stay in close contact and provide abundant information and supervision to the caregivers. 

 

Is there anything I can do to alleviate the loneliness that my parents feel? 

 

Does anyone have experience with helping a family member (or in my case two) who is affected by mental illness, dementia, or depression?  This is a family disease and I must admit that today I am feeling some of the symptoms of the family illness.  We are all carrying a part of this problem with us.  There is a reason why my brother no longer calls or visits.  He's trying to stay away from the mental illness, too.  Sadly, I don't think he's immune just because he doesn't come around. . .

 

Someone please let me know what I can do with this ball of pain I have today.  My parents need a lot of help and I am only one person.  What do I do?

 

Bummed,

Dolly

 

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Hi Dolly:

 

Take a deep breath... then keep on breathing...

 

Changes are difficult but very rarely are they what we expect. I cannot tell you how many nights I laid awake worrying about things that never came to pass - TG! In fact the changes were much easier than expected but what is difficult now is recovering from the negative effects of all those years of worry!

 

My father declined after he recovered from hospice the first time. When he realized that he could not communicate afterwards due to aphasia his quality of life was not the same. I think, at that point, he lost some of his will to live. He was a very verbal person and the inability to communicate devastated him. It is extremely difficult and heartbreaking to watch one that you love and care for decline.

 

Dolly, keep the faith that the new home health aides will be good to your parents. All you can do is be aware of how your parent's respond to them. You will know and quickly make it right, I am sure of that.

 

I think the more important issue is how your mother is feeling. I wonder if she is tired of the physical challenges she has endured for so long or could she be worried too. Perhaps it's time to talk about it?

 

Anyhow, dearheart, you are an angel to your parents. Try not to get too anxious for both your parent's sake and your own health! We are here for you and feel your pain...

 

Hugs, Glenda

 

Hi Dolly

 

Feeling sad and scared sometimes is perfectly okay, and as Glenda said just keep on breathing, slow and steady.

Sometimes I think the feeling sad and scared is my default setting... like today, I'm plain old miserable and the news that my immediate boss is pregnant has me anxious because I know what the 4 months of maternity will mean for me - worked to a frazzle trying to keep up with the workload.

 

Realistically you can't worry about everything.. I'm an anxiety magnet so I find that particularly hard. I literally have to ask myself, 'do I know the worst will happen?' 'no.. okay then stop worrying about it'. It doesnt always work. I will prepare myself for the worst because then if it does happen I'm not caught off guard and I can handle it, if the worst doesn't happen, then its a happy bonus.  Not exactly a great way to live, always expecting and preparing for the worst...

 

I hear what you're saying with your mom declining. My mom was a independant, strong and very stubborn person. Now, she can be almost childlike, and of course that person I used to confide in is all gone. Most of the time she doesn't even understand what I'm saying, its like real life worries and goings on are just beyond her understanding. Overall its a feeling of loss, I feel like I lost my mother years ago. These days any communication between us leaves me feeling completely drained and tense. Trying to convince her to just give things a chance is very tiring. She is determined to feel done in and uncared for, so no matter what i say or do it's never enough.

 

All I can say is, hang in there, we're all here for you.

Hugs

Sk

 

Oh girls ~

This has been anything but a "red letter" day. 

 

1) The new home health agency already has failed to provide services on the THIRD morning of scheduling.  The nurse said yesterday (to my mother who has dementia) that she can't be with her tomorrow (meaning Monday) because she has a family emergency where she needs to fly to Pennsylvania (said something about a funeral or death in the family).  Well, apparently she didn't tell her boss/the company the same thing.  She left them in a lurch and they couldn't get the replacement out to Mom this morning either. 

 

2) The replacement nurse called and said that she was worried about her daughter who she hadn't heard from in days and she was completely convinced that she was at the Sugarland concert and is dead. So, she was going to go help her daught who is missing today.  That concert and incident was Saturday and all of the injured/dead have been identified.  That happened a few days ago.  The debris is actually in the process of being removed.  This was an all time FAIL excuse.  How many INSANE excuses have you heard from home health aides?  Because, I'm convinced I could right a book filled with the INSANE experiences our family has had with the dingbats that come into the house.  It's NUTS.

 

3) The night hours were not approved by the new agency because they were going to just wait until prior authorization hours are approved.  We are supposed to wait 8 weeks until that is approved or denied.  I was pissed so I called the agency and said that they must cover evening hours immediately.  We CANNOT wait 2 more months for those hours to begin!

 

4) In the midst of making phone calls and being angry with the home health agency I get a call from my Mom's bath aide who said she couldn't get a hold of my Mom so she went on to three other clients, bu that she would come back in about three hours.  meanwhile, Mom is sitting in a saturated diaper from last night.  So, of course I head toward Mom & Dad's house to change her and get her ready for the day.  This is all by 9am, by the way~

 

5) In the midst of that INSANITY, and my anger, and phone conversations - I was SPEEDING.  Yup, you guessed it a ticket on top of it all.

 

6)  Oh, and then I just dropped a few words in a text to let my boyfriend know that I was frustated and he calls me (while I'm changing Mom).  I call him back and he proceeds to tell me he's at his drug dealer's house outside enjoying nature.  Oh how flipping blissful!

 

Does it really every get better!?!?!?!?!?!

 

I really just want to go back to bed and pretend this day didn't happen.  Instead I got cracking on some outstanding homework assignments.  I've got the majority of a significant paper done.  I'm heading back to Mom's to help her get ready for bed.

 

Please say a prayer for me.  I think I'm losing my marbles.

 

Still smiling,

Dolly

 

I'll try to go slow as I drive home.  And, perhaps stay off the phone with morons!

 

I hope you had a better day than me. 

 

 

Hi Dolly

 

Oh boy! I had no idea these home nurses were so unreliable... and rather inventive excuse makers! Is there some body you can complain to? I know I know, what will that help? Service in this country is near non-existent and most don't even bother complaining anymore as nothing is done. I find complaining cathartic - I get my views out there even though hardly anyone will even read it or respond, it just makes me feel better....

Once it even worked... an ambulance dispatcher had a shouting match with me because I wanted them to take my mother to hospital, because she wasn't dying or something they refused and hence the argument ensued. I complained  - and amazingly I got a call back, they had listened to the recordings of the conversation and the dispatcher in question was disciplined. Wow.

 

You might try the cojoling thing... or I even just burst into tears when asking for help, sometimes it gets me what I need -  what my mother needs at that moment. Do whatever works for you... but don't let these people get the better of you. I can't only imagine your stress levels!

 

What's up with boyfriend? He is so not helping! I'm so sorry he still had to rub just a bit more stress into the morning.

 

I sincerely hope your day improves and you have a peaceful evening so you can recover a bit.

Strongs

Sk

It got worse that night - My a/c went out, as well.  I called the emergency maintenance team who arrived and notified me that it wasn't repairable at that time.  He returned with two box fans for us to use through the evening.  The 81 degree apartment eventually got to 75 by sunrise.

 

On the Mom front:  The following morning, another no call, no show for the caregivers.  Someone finally arrived at 10:45am. They are due there at 8am. Oh my!  If only all employers were so flexible.

 

I marched over to my apartment complex the next morning, with my lease, $174 electric bill and my phone log indicating that I have attempted to get this a/c fixed since June 15th.  I have made 2 night/emergency calls because the a/c died at night, 4 calls for general maintenance assistance and 2 in person visits requesting help.  The a/c didn't turn off for two months and burned up two motors.  Hence the $174 electric bill for a 500 sq. ft. apt.  Ugh!

 

I'm STILL not done with my homework assignments, by the way. (nowhere near)

 

I dropped one of my classes.  That leaves me with three.  Can I handle that and deal with DAILY crises with my parents?  Do I have it in me?

 

I took some action today.  I went to the home health agency in person because I felt that I was getting the run around from four individuals at this new agency.  The scheduler called Mom today and said that they could not provide services if she was also receiving Medicare home health services.  Oh my goodness. That sent me through the roof.  I immediately thought, here we go!  We're going to get the same run around that we got from the last two agencies.  Just after I got off the phone with the scheduler I walked into the agency seeking information about my mother's care plan.  The owner of the company was contacted and was on her way out to speak with me, when two other representatives arrived in her place.  (That was somewhat disappointing, but I rolled with the in-flight correction, because that is what I do.)

 

I also spoke with my Mom's case manager as part of the action steps. 

 

As far as anyone to talk to about all of this - - - no one really cares to listen any more.  People want to give me suggestions like hire an attorney.  Others tell me that I can do this and just hang on.  No one ever asks how I am feeling.  No one!

 

I want to give up!

 

Still bummin' ~ Dolly

 

I must admit I don't think prayers work.  My faith is at an all time LOW and I don't really feel a part of anything.  For a myriad of reasons I have come to a place where I feel that prayer is something "religious" people do to make themselves feel better, when they'd rather not get dirty with life's trials.  I find that all of my current circumstances are anything but blessed.  I feel detached from God.  I expect that you too will ignore me in all of this because of fear of this "sick thinking" spreading.  I am consumed with fear and frustration over a few problems that I am facing with my family and my relationships.  I have come to understand my family's experience with mental illness as 2011's version of leprosy.  We are all consumed with the symptoms and being shut off from society so that it doesn't spread.

 

My boyfriend withdrew $120 from my bank account two days ago (without asking, btw). I think I am going to be kicking him out soon.  I don't have the mental, physical or emotional strength to take care of him in the midst of all this.  His reaction to me last night was very childish and manipulative.  I just don't have the energy to waste in childish conversations where he tries to make me feel like the villain for confronting him about stealing money from my bank account.  I'm going to tally up the money he's borrowed in the past few months and determine just how bad it is.  I've been pretending that everything is okay with him because I just don't feel like arguing/confronting...  I'm guessing he's banking on this little flame being extinguished too.

 

I am so exhausted. 

 

I broke down and cried last night (a LOT).  The caregiving company is more of a hassle than it's worth.  My mother's mental health is diminished (and it has been six days of their CHAOS in our lives).  She is agitated and on edge.  My father is equally agitated.  It was much better when I went there every morning and night and made it there on a SCHEDULE!  Why can't this caregiving company figure out the schedule and arrive on time?  I think I may very well can another company.  I am not going to do so without having some serious conversations with the owner of the company. (Who I did attempt to speak to two days ago.)  The caregiver who arrived on Wednesday evening arrived 45 minutes late and she committed fraud by saying she worked 60 minutes when she was only there 25.  There has to be someone to protect Medicaid Waiver consumers...

 

I now see why primary caregivers get depressed.  I think I'm heading toward a mental break down.

 

( dolly









Hi Dolly:

 

I so understand your disappointment in the health care agencies and the BF. That is just too much too handle. I won't bore you with my stories but suffice it to say that sometimes it is better to cut your losses earlier rather than later. Especially if someone is draining your resources because he or she typically will not stop until there is nothing left to deplete...

 

More important is the health care situation. Wow, I have never heard such inventive excuses either! How frustrating and irritating. You have every right to be upset Dolly. However, please do take those deep breaths and try to move forward. Each day is a new day and, hopefully, better than the last. Don't let 'em get you down - things do change for the better sometimes - if only because they have to! Keep the faith Dolly, things will work out.

 

I know it's easy to say for someone not dealing with the same difficulties at the moment but, I think, many of us have been there with medicare, home health, relationships falling apart, dementia, anxiety and all. It is just difficult when it is all happening during the same time. Somehow we survive but I do remember being on the edge often myself... Just keep breathing and controlling your own anxiety. That is so very important!

 

Anyhow, those are just my thoughts. I hope it helps a bit. Hang in there dear heart - and take no prisoners. We are here for you!

 

Hugs, Glenda

 

 

 

 

 

 

 

Having to rely on others to take care of family business is very difficult.  We found a CNA home health caregiver through the local hospice program in my mother-in-law's community.  We hired her, and she has been a blessing, since we live in Michigan and my mother-in-law lives in NC.  The CNA comes every day - routine is extremely important - and insures that AM meds are given and PM meds are given.  She has a key to the house, her name is on the car insurance, and she is committed.  I would try to find someone, independent of a health care agency.  I know that we count our blessings every day, but inevitably a live-in caregiver will be needed, as the alzheimer's progresses.  I wish you luck and hope that this helps you find an answer that works for you and your family. 

Hi Dolly

 

In my humble opinion you're going to need to get tough - for you. When we're at our lowest is when we find out how strong we actually are.

In situations as complicated and fraught with difficulty like yours are you're going to have to be your own warrior.

 

As glendarella said cut your losses with BF... he sounds toxic, and who on earth needs their money 'stolen' from them?! You don't need further trial from an area of your life that should give you support.

 

Take charge, and take care of you.

 

I'm praying for you.

Sk

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