Need input to my feeling overwhelmed.

[susanep]

I feel so depressed, because with my lupus, sjogren's, and fibromyalgia, I have a hard time doing much of anything.

I have a family situation, and appreciate any thoughts from others. My 82 year old father just got out of a nursing home where he was for a few weeks for rehabilitation. He has had to go in before. This time his family doctor told the family that he needs 24 hour care now. He got upset, because he wanted to come back home, and so he quit doing his physical therapy. Due to that they said he had to leave, but his family doctor said he wanted him to stay. Well my sister went to get him, and so the doctor which he has seen for years will no longer see him. He will have to find a new doctor.

My two sister expect me to go down 4 times per day to give him injections, and his other meds. I am the closest one, but I can barely read anything right now. I have worse brain fog. No energy except to sit in a chair to do at the most a bit of sewing that brings me a little pleasure. I am 61, disabled, and retired on disability social security since 2010. My sisters seem to think I can keep up with all of this, including all the documentation on this. I do understand that the youngest sister works and lives about 45 minutes away. The other sister lives about 20 minutes away, and closer to my age, and not in the best of health, but doesn't have autoimmune disorders. She does take it easier due to having stents put in for blockages. I still cannot do what she does. My husband is also disabled with severe diabetes, and congestive heart failure, and we both take meds for depression.

We barely live ourselves with a house that is a mess and needs cleaning, but have no help. We do good to manage to get our meds, and some groceries. Husband does the cooking with quick things, because I cannot stand that long. I have to lay down a lot during the day.

What do I do? I love my dad dearly, and he insisted coming home, but we are not well at all either. I feel I am getting worse each year. I am a christian and feel guilty to do anything, but try to do what they expect, but I feel I will just end up in the hospital myself.

I am so sorry this is so long, but thought it would help to make my situation clear.

Feeling Overwhelmed
susanep

[litliwlowa]

Susan

I don't know what to suggest short of having a family meeting with your siblings and laying down some firm boundaries. And if the others can't assist REALISTICALLY with your dad, They need to step up period and get on board with his doctor's position. And if that means y'all being on the same page to work with him to go back into rehab, then that needs to be the situation.

In the meanwhile, please don't go down the road of feeling guilty.

There is a difference between what in our hearts we want to do for out parent(s), and the reality of the situation. Sounds like your cup runneth over already.

Sounds like the reality of your personal situation is that you simply do not have the resources to care for him at home (not only financial but also the stamina between your health issues and your husband's issues). Nor make a drive 4xday every day for his shots

Flip side of coin, it's normal for an elderly parent to want to be home when at the point of needing 24 hour care. That's when family needs to come together and assess the REALITY of that option, then make a collaborative realistic decision either way, etc and support the doctor's position on the best interests of your father.

Now you're in a pickle. My initial reaction is get a family meeting together asap and lay out the reality and come to a meeting of the minds - reality based not feelings based. The real issue on the table is what is in your father's best interests and if that cannot be provided at home then he needs to be in a nursing home.

In the meanwhile, see if the doctor who won't see him any longer be willing to have a sit down with you to discuss the situation and dilemma.  That doctor might even offer the name of another doctor that can be consulted with as a second opinion which might get your sisters on board with the reality of the situation.

Sounds like your sister has some emotions of her own that are interfering with her judgment (maybe she feels guilty also and that was her way of alleviating it)

Next option - would require a doctor's order, but what about home health aid until you all get this sorted out? You may want to look into Elder Services to see what assistance they may be able to offer.

Family dynamics in this kind of situation can really bite. What gets overlooked is the best interests of your father. If you and your sisters are not able to provide what he needs, then it is a slam dunk he needs to be in nursing home for his rehab.

I get it that he expressed the want to be home. But his wants apparently don't line up with what is in his best interests. No matter how anyone feels about it, if at home he cannot receive the care he needs, then his best interests are not being met.

You're in a real pickle on that - sounds like your sisters are not supportive of his "want" to be home in the context of stepping up to the plate to do what is needed so he can be at home and in that perspective what is in his best interests is what any decisions should be based on. Not his wants but his needs

Does he have a health care directive? And if so, who did he appoint as the decision maker?

Amanda

[susanep]

Thank you Amanda for your comments. My youngest sister who is in her 40's was told by both of our parents to take over everything after one of them dies. My mother died in 2012. So she has the directive. I guess that is what you call it. The one designated to be in charge. 

My other sister was getting told by dad a lot when she would visit him that she put him in there, but she didn't. His doctor did. So she felt bad, and sorry for dad and brought him on home against the doctor. He would not release dad, but I guess he couldn't be kept there against his will so he left with her.

Now the two sisters don't know what to do so that is where they expect me to do all of this, and I didn't sleep all night and went without all of my meds, because I was too nervous. That upset my husband, and he called the closer geographically  sister this morning to tell her we have to go to the endocrinologist for his appointment, and there is no way I can handle this with dad. He told her that they will have to figure it out.

I do feel guilty, but I also have a husband , a second marriage that we want our time together while we are still here, and I have one adult son that I want to live hopefully a few more years to be a part of his life.

I love my father, and my sisters, but due to my illness I can't keep up anymore.

susanep

[susanep]

My youngest sister who is in her 40's has the directive. My other sister has been given as a second contact person for dad. They don't have me on anything. I understand that though with my issues.

The sister closest to me in age did feel guilty, because dad made her feel like she put him in there, but she didn't. The doctor did after he was in the hospital.

I was awake all night and didn't take my meds due to so much anxiety of how I was going to handle this. It bothered my husband so he called the sister closest to us, and told her we cannot do this, and we have to go today for his endocrinologist appointment.

I don't know what else to say.

susanep

[susanep]

Sorry my last message is similar to the one before. The one before went lost in air, so I wrote again, but then they both showed up.

susanep

[Liz D.]

susanep, my heart goes out to you.  I unfortunately have been in a similar situation needing to admit someone to a nursing home twice.  Once with my father and once with my aunt, his sister who had never married and had no children.  It is torture on you.  The guilt is overwhelming, but there comes a point when reality must take precedence.

And the reality is that care giving around the clock for someone causes anger and resentment.  You don't want it to, but it does.  Your life is over as you know it.  Then it becomes harder to keep that resentment in check and it usually is taken out on the patient.  (I am not necessarily talking about abuse, but just our attitude is not as loving as it should be.)  Then you are still plagued with guilt because of that. 

When one is put in a nursing home, you can still have a somewhat normal relationship with the person instead of just becoming their caregiver.  Sure it will take awhile for the patient to adjust, but they do.  You can make their portion of the room as homey as you can with personal items, pictures, etc. and your regular visits will be about each other and talking and not about nursing because that is what the nurses are there to do.

Contrary to popular belief, nursing homes are not dumping grounds.  I am sure some people do consider it that way, but my experience over those years was meeting many different families who went regularly like myself and loved their family members, but there really was no choice.  We all did the best we could with the circumstances given.  The real key is not to abandon them there but continually show love to them while there.  Sometimes that is missing when we are only their caregivers.  (Of course, Irish is a different example.  Her husband sounded like a gem to care for, but I am sure it was still not easy.)

Anyways, those are just some thoughts I felt I needed to share.  To be honest, I still get a feeling in the pit of my stomach every time I hear or see the word "nursing home" and I don't think that will ever change, but I do know in reality it was the best decision.

Btw, my father lived for 5 years and my aunt lived for 3 years in their nursing homes.  We visited regularly, often daily, and made it a pleasant visit, sometimes for hours.  Can you imagine going to your fathers 4 times a day for injections for the next 5 years.  You will be the first one to die with all the medical issues we have!

I hope this post is not too strong.  If I have offended you or anyone else, my sincere apologies.  Just know I am feeling for you.

Liz D.

[finallyadx]

Hello - my heart goes out to you as well.  I believe that what is in our hearts and what we are physically capable of doing often does not mesh.  You do need to lay down the law and tell your siblings what you are and are not capable of.  Is there a way you can get home health care for him?  A visiting nurse or something? 

I wish I had sound advice but I have no experience in this area.  Unfortunately my mother passed suddenly/quickly two years ago or our family may have been faced with some difficult decisions.  I would have wanted to everything in my power to help her to remain "independent" and at her own home, but that is the point at which I started to get really sick and my health declined so I would not have been able to. 

I hope you can sit down with your siblings and maybe come up with a plan between you all to take the "burden" off of you. 

Please keep us posted.

I will be thinking positive thoughts for you.

Kim

[Carolina]

Dearest Susan,  This is so very difficult.  Sometimes choosing the right thing is the hardest of all choices.

There is a Chinese saying:  First save self.

The safety message on an airplane:  Put your own breathing aid on FIRST, then help others with you.

If you do not care for YOURSELF, you cannot help others.

You simply must announce that your own health is at risk.  And then YOU must decide exactly what you can and cannot do.

Use the worst case scenario of your own health.  If you cannot do anything announce that.  If you can do ONE thing, announce that.

If you follow what I'm saying, it is up to YOU to save yourself and to decide what that means. You cannot allow others to try to assess your health and then choose what they can do, leaving the rest to you.

Only YOU know what you can do.  And I'm sure you know that this changes from day to day.  So you will have to choose the plan that protects you the most.

I am always amazed what people can come up with when they realize that the 'easy option' (Susan will do everything) is off the table.

1. Other family members will do the work.

2. Hired people will do the work.

3. Your father will go back into a care situation (nursing home, hospital)

I'm sorry to sound so 'definite' about this, but unless a definite stance about your health and your limits is adopted, you will be the one to do everything.

Keep us posted,

Hugs,  Elaine

[Audrey1913]

Susan,

I am sorry for what you are going through, that is not an easy situation. I agree with the advice that other members have given. Seems to me you are a caring person otherwise this wouldn't overwhelm you so much but I agree with what others here are saying, you have to take care of you first. It's not selfish, it's necessary for you to take care of yourself and things will work out.

love and blessings to you

Audrey

[litliwlowa]

Susan

WOAH. Okay this is what is troubling me. Your sister WITH authority to act in your father's best interests (not his wants but his best interests) dropped the ball on her authority.

That your father was removed against medical advice is very concerning.

Yes I get it that the heartstrings get pulled in these most difficult situations, especially involving a parent.

First and foremost, your priority is to take care of YOU. Period - not negotiable. And do not permit the guilt strings to be pulled and do not allow your sisters to shame you into stepping up and owning the consequences of THEIR decision to take him home.

Secondly, one option if you can't come to a meeting of the minds with your sisters to return your father back to the nursing hiome, would be consult with an atty or even elder services for that matter for guidance on what options you may have to take over quardianship of your father so you can restore him back to the nursing home.

There's no comfortable solution here.

Thirdly, and this may sound harsh and I understand we are talking about your father here, your sisters removed him AMA - dump the consequences for the at home care he needs right in their laps.

Clearly they KNEW or at least were informed that your medical situation was NOT conducive to being a fulltime on call caregiver to your father.

So now they want to lay the responsibility for his specialized care on your lap? Oh no. That doesn't fly at all.

I'd probably start with a very soon meeting with your sisters and lay it all out in a reality check. You're available to visit on occasion but that is all you are available for.

But whatever route you choose to go with this, make sure what you say is what you are prepared to follow through with.

Aaarg families!!

Hugs

Amanda

[irish]

Susan, I am really sorry that you have to deal with this situation. Your 2 sisters are not helping you at all. I think that the time has come for you to call them and tell them that you can't do it as your health is bad and that if they don't step up to the plate you will have to call social services. Your dad is a vulnerable adult and the fact that he is not able to get his meds, meals, care, etc means that he is going to be high on the scale for someone reporting this.

You need to protect yourself as you are the closest relative and you can't do it and should not be responsible. The sister that took your dad out of the nursing home has probably set herself up for some static because of this whole fiasco. When a doctor refuses to care for a patient anymore it is usually because of noncompliance of the patient/family, etc. This is not an uncommon thing because of the dynamics of families and because of guilt.

Please know that whatever you do to get care for your dad is ok. He is not of sound mind at this stage of the game and doesn't understand that he is not getting the care he needs. This is just so common and you would do well to call social services (to provide/protect for your dad and to protect yourself) and explain your dilemma if your sisters don't stop up to the plate. Please keep us posted on this. The time comes when one just can't carry the load alone. Hugs. Irish

[litliwlowa]

I concur with Irish.

[Head2Toe]

Susan - I'm so sorry you and your sisters are having to struggle with this situation.  I remember when the decision was made to put my grandparents into extended care (at different times) - it was emotionally painful for everyone  

It sounds to me like there may be some degree of family denial about the severity of your father's health situation, because even IF you were well enough to make the trip to your father's home four times a day, I'm still trying to figure out how everyone has agreed that four visits a day (or more when your sisters visit) equates to 24 hour care... 

I agree with the wisdom and advice offered in this thread by others.  Let us know how this turns out.

[Carebear]

Dear Susan,

I am not nearly as well spoken or wise as the other members who have posted, but I did want to offer my support to you none the less.

Firstly, you have not done anything wrong, so please stop beating yourself up. 

Your sisters have never gotten how sick you are.  That saddens me.  And I don't think they ever will.

Dad needs a representative, and it looks like you won that by default.  I know it will be hard because I have been in your shoes.  But you don't need regret when this is all said and done.  I wish you strength to get through this with the help of your husband.   And of course you can lean on us as well.  Take on step at a time.

[Bucky]

(((Susan))) - sending a hug to you, as you could sure use one. 

To be honest, this doesn't surprise me about your sisters - as through the years with some of your other posts - your sisters have always put your parents care on you - since you live next door to them.

As our parents age - most need additional care, that many times, family just can't provide. 

Your dads care becomes a balancing act - between a rock and a hard place, at times.  Especially if your dad is refusing to do the therapy.  If he doesn't follow doctor instructions, and then family pulls dad out of the facility - against the doctors advice - it becomes a sticky wicked.

I agree with the others that you three sisters need to discuss this situation about dad - and be truthful with each other about what you can and cannot do to help dad.  If you are not physically able to be the caregiver (which is a HUGE task in and of itself - and you already have plenty on your plate) - say so.  Don't let your sisters guilt you into something you know you just are not capable of doing.

I know it's hard when dad wants to be in his own home - in his familiar surroundings, etc. It becomes difficult when you want to honor your dads wishes, but, also realize that he is not able to care for himself and "someone" needs to care for him . . . . but, NOT you.  If none of you sisters can give dad the care he needs - then, it will need to be discussed what to do - whether going back to the nursing home or getting home health, etc.  This situation just can't be swept under the rug - your dad is not going to suddenly "get well" and be able to care for himself.

Susan, you have a big heart - we know you love your dad and want what is best for him.  I'm sorry you are once again left to handle a situation with your dad and that your sisters put the task on you. 

Please take care of yourself - skipping your medicine and not getting enough rest will not help you.

Hugs,
Bucky