Another detour - will we ever travel? - RV-Dreams Community Forum

phyllen · RV-Dreams Family Member

Another detour - will we ever travel?

GENECOP · RV-Dreams Family Member

This suggestion may not be received well by many, but the level of care that is required i believe needs to be delegated to professionals in the field. They are our loved ones but i certainly do not want anyone in my family sacrificing there life to care for me 24-7, Good luck, Gene

Racerguy · RV-Dreams Family Member

I'm in agreement with Gene. I admire the fact you have done your best to care for her but your own health and well being is important. Linda's Dad lived with us for years and we enjoyed it but as he aged the constant care he needed started adversly affecting our lives and we had to make the hard choice and let the professionals take over. It hurt to do it but was the right thing to do.Good luck.

TxYellowRose · RV-Dreams Family Member

Been there, done that.

I hope you are receiving support from family, friends and professionals.

Have had to make the hard choices talked about by Gene and George. Yes, they are tough ones, but necessary in many cases. My Mom got much better care at the end than I could have given her...and it gave us the opportunity to be mother and daughter more and enjoy each other more.

Peace...

2fortheroad · RV-Dreams Family Member

We are in agreement with everyone. Phyllis you and Leonard can only do so much. You need to take care of yourselves first. We just went through this with Sharon's father. Your mothers Physician can and should write and order for assisted living care.
Hope the best for you and your family.

2riker2go · RV-Dreams Family Member

My family's experience is the same as everyone else's here, but I'll add it anyway....my mom and dad took care of my grandmother in her home for as long as they could, but it got to a point where it was just not possible for them to provide the level of care she needed. They had to move her to an assisted living place, where she was better taken care of than was possible in a private home. There were professionals there to give her the care that she needed. There also ended up being benefits that we hadn't really thought of, like social activities, exercise. They had people who came in to do the residents' hair and other things like that. It ended up being a blessing.

Gary · RV-Dreams Family Member

I have to agree with everyone else here. It may sound bad but it's true.

There are professionals out there who do this and places that provide activities for seniors who can't take care of everything themselves any more. My wife's uncle was placed in an assisted care setting and was well taken care of.

You two need to do what's right for you. I understand the feeling of commitment but don't give up your dreams.

phyllen · RV-Dreams Family Member

Thanks for all your replies. We both agree that she needs to be in a home. However, there are 9 siblings. With 9 siblings, it is difficult to get agreement on anything. Two siblings have promised her they will NEVER remove her from her house.

One sister is in jail, another has her own medical issues and can help in only limited ways. Another sister is able to help during the day but only one day a week. The remaining sister works fulltime. She and her husband come one day most weekends and stay over.

The brothers - one works away from home and travels. One has a fulltime job but stays from 7 pm to 6 am one night a week and sometimes he and his wife stay over a weekend night. Another brother and his wife stay overnight often but they both also work so can not be here weekdays. This leaves one brother and Leonard. Between us and this brother we must be here each weekday and also stay over at least once a week. This is taking a toll on the family, especially the three brothers and their wives who provide the majority of the care.

It would probably be easier to make decisions if there were fewer siblings.

Luvglass · RV-Dreams Family Member

It sounds to me like the natural solution is for the 2 siblings who say they will never remove her from her home take over responsibility for her care then.

Talk is cheap when it doesn't inconvenience you.

Why should you assume the responsibility? Keep in mind, you only go through this life once, no do overs!!

Steve C · RV-Dreams Family Member

I agree with Fred and Gene. We had Evin's dad in our home until we could not leave him there alone. He did not like going to the Veteran's Home at first. But, in a few weeks when we would take him out for lunch and back to our house by mid-afternoon he would ask to go back to be with his friends. He would often complain when asked but we would often go to visit and he would not know we were there watching him and "catch" him laughing and having a great time.

Please do not let shame and guilt rule your life. I just lost three of my college fraternity brothers to early deaths. That is one reason why we have just spent a month of the road since picking up our rv on April 2. Today, we are on the second largest natural lake in North Carolina and are heading for the Outer Banks tomorrow. Heading for Oklahoma later this month and then Utah. In July, fishing in the "U P" of Michigan with friends from Ohio. None of us know how much time we have left or when our health may fail. Everyone that really cares about us has encouraged us to do exactly what we are doing.

My parents just moved into assisted living and there have been issues. But adult children deserve a life and should not be responsible for the life-style choices their parents made. If siblings want to be martyrs--let them!!!! Getting old and failing health are part of life. I believe it is our parents' responsibilty to learn to "live life on life's terms" just as it is ours.

phyllen · RV-Dreams Family Member

You all have given me much to think about. Strangely, Len feels less guilt than I do when we talk about getting our life back. Thanks.

Phyllis

Mallo · RV-Dreams Family Member

I have to agree I'm the one providing a home for my mother and when the time comes will be the one to care for her at the end. I know my sisters will not be there to help but they never have been and have never promised to be.

If two of the nine are the ones making promises they have to be the ones to step up. The two of you can give them a break from time to time as you pass through the area. But if Len didn't make that commitment to his mother he's not the one who should be sacrificing his life for her.

Mallo

2fortheroad · RV-Dreams Family Member

If you choose to ride this out to the end, I suggest that you document all time spent giving care, and any monetary you might put out above your own living expenses. I would also have a family meeting and let it be known that you would be expecting compensation when the estate is to be settled. Just might help the others to "Sh-t or get off the Pot". If you think you are being taken advantage of now, how are you going to feel if this goes on for a long period?

Cindy T · RV-Dreams Family Member

I think everyone here has given good advice. I especially agree that the siblings who have made "proclamations" about no assited living need to live up to those & take over her care. It's funny how when you put your foot down & do what you need to do for yourself, everybody else realizes they have to do what's necessary too. Not an easy decision, but none of us are getting any younger!

Cindy T

two travelers · RV-Dreams Family Member

I work in Occupational Therapy with in a Nursing /Rehab Center for elderly people.. Have you contacted your local Office of the Aging to see what services that they have to help you out... home health aides, mech. lifts and home therapy Physcial and Occupational...Also if your mother is over 65 and spends just 3 days in a hospital that would allow her to be admitted to a Nursing Facility as a MC A patient she would be able to recieve Therapy to get stronger the first 20 days are covered 100% the next 80 days as long as she is participating in therapy is covered 80/20% if she has a secondary insurance that will pick up the 20%. She does have to be participating and showing progress most people I work with are in Tx 35 - 45 days.....Talk to your family doctor about her decline in health and need for assistance .. that should quaifiy her for a hospital stay.
All of my best to you...patti

DagoRanch · RV-Dreams Family Member

If she's that bed-bound and in need of round the clock attention, you may also want to look at getting her on Hospice as well. Lot's of people have different idea's about what Hospice is, I suggest you look into it and find out what they really are about and go from there. Lot's of peoples misconceptions about Hospice keep them from getting the help they need and believe me they are an ENORMOUS help!

Tim & Robyn · RV-Dreams Family Member

Phyllis and Len,

My heart goes out to you. These are the most difficult times and the most painful decisions that anyone has to make in this life.

To me this is a situation that cries out for professional help, whether it be hospice or whatever.

As far as the siblings go, if they are not willing to step up to
the plate, then I wouldn't pay any attention to them. That may sound cold, but it's easy to make promises and then sit
on your hands as long as someone else is willing to take the responsibility... and the hardships that go along with that.

These things are never easy... and when they do happen you finally find out what kind of character the other people involved really have.

I lost my wife last July. She had been hospitalized 250 miles from home for 13 months after suffering serious burns in an accident before she finally passed away.

For the whole time I hoped and prayed that she would be able to come home some day, no matter what. She would never have been able to walk again, she had an ostomy bag that would have needed tending to, and she had suffered brain damage because of anoxia from a pneumonia.

I was prepared (or so I thought) to do whatever was necessary, but she would never have been the same person I loved and married again. That would never have diminished my love for her.

I have no wisdom or counsel for you. This is difficult and painful, no matter what happens.

I think God was good to take my wife when He did, no matter what my personal feelings about it may be. My wife had professional care every step of the way, and she was finally comfortable, and even smiling and happy just before the end, even though she could no longer speak. I could see the love in her eyes every time I was able to visit. And that is a comfort

I guess the question that needs to be asked and answered is can professional care somewhere provide better care than you are able to provide, regardless of whether you are travelling or stationary where you can see her every day?

I wish you the best. These are the hardest decisions anyone has to face in life.

God bless you both,

Tim Fansler

Ivey · RV-Dreams Family Member

Wow............my heart goes out to all three of you. I too can offer no real advice. But know that you are in my thoughts.

Vicky

phyllen · RV-Dreams Family Member

Tim - I remember so well when your dear Robyn died. Each of us here shared in your grief.

We do have Hospice coming in a few times a week. Also, an aide comes three times a week to bathe Mom.

Several months ago the oldest brother was making inquiries about a home. Every sibling and their spouses met here at her house. One sibling pleaded to come live with her and take care of her. This sister had been outcast due to her wiping out her mothers savings account. She has a history of hot checks, stealing, hooking, drugs etc. She has always been Mom's youngest and favorite. Mom sees nothing she does wrong but is quick to talk about the rest. So - it was decided to allow her to move in with her husband, while the others oversaw that all was going okay.

For a month she did an excellent job and the plans for a home were dropped. That ended when the law caught up with her again. Not paying fines, not keeping probabtion appointments. She is now looking at a minimum of a years incarceration.

So now another brother who does do a great deal for Mom is insisting on no nursing home even though it might wreck his marriage.

We are leaving here May 22 and heading to South Dakota to get our drivers license. We decided to domicle in SD and have our vehicles insurances and tags. Then we head to NJ for at least 5 weeks. We've decided this is what we need to do.

No easy solutions.

phyllen · RV-Dreams Family Member

two travelers. This is why she is in the condition she is in. Three years ago she was staying with the oldest son and his wife. She was using a walker. A therapist came to the house several times a week. She absolutely refused to do any thing he said. When my SIL tried to make her, she would tell people Susie is being mean to her. It caused a riff in the family.

So two years ago she moved back into her own house. Another sister moved in with her. Mom refused the walker and insisted on wheelchair. Thence, her legs are completely useless and now refusing to use her arms much.

So the suggestion of a therapist is a good one, but only if someone cooperates. She won't.

TXRVr · RV-Dreams Family Member

I also agree with Gene.

With the introduction of retirement and assisted living facilities we have an option that past generations lacked. And if we are not planning for our own old age welfare then we are lacking in love and respect for our own kids.

I suspect that the majority of family member caretakers would feel it a burden to have that job regardless of the love involved - and to a great degree if it hindered their own golden age years. So which tough decision gets made? Being burdened (and resentful that you are) or feeling guilty that you chose not to be.

When an aging parent refuses to do something or the other at the expense of their children then perhaps it's time to revert to how one would have handled their own kids if they acted similarily...make the adult decision and go on with life. It isn't a matter of parent vs kid. It's adult vs adult. The situation won't get any better with age....pun intended.

So who else besides me has "heartlessly" yanked the car keys from his 85 year old mother? Adult vs adult and she's alive to complain.

-- Edited by TXRVr on Friday 7th of May 2010 12:21:32 PM

bshart · RV-Dreams Community Member

This just reminds me how lucky I am that my dad made the decision at 85 to move to an assisted living facility after my mom died. He also gave up his car. I told him that I hope I am able to make such sensible decisions when my time comes.

-- Edited by bshart on Thursday 6th of May 2010 11:40:00 AM

53 Merc · RV-Dreams Family Member

A friend of mine made the tough decision to give up his car and move to an assisted living recently. I applaud his sensible and safe decision. I hope I will have the sense to do the same when and if it becomes needed.

DorisandDave · RV-Dreams Family Member

Phyllen,
My heart goes out to you on your situation. You have to do what is right for you. You've tried and that's what counts.

My father needed assisted living, not so much to assist with daily things, but just to have other people around...just in case....
He had fallen a few times and he had an issue with his blood pressure that caused him to pass out. We were so afraid he would do it while driving.

He was an independent old soldier and it was difficult to move him to the decision to move to this new place, but push him we did. It worked out much better than we had hoped.
He REALLY enjoyed the attention from ladies at his new home and found a few men he knew and had things in common with.

A year after he moved there he was diagnosed with Lung Cancer and had only 6 more months to live.

Even tho he was living in an assisted living place with all the care we could have wished, we as his children could still stay their overnight with him and care for him ourselves...as much or as little as each of us was capable of.
I lived the farthest away...me in Kansas...him in Seattle. I spent the time I could, with all the commitments of my own family.

At 86 and at the end of his life he considered his little apartment there his home and was happy he could die with his family and friends close by. He went peacefully in his sleep, just as he wished.

Doris

-- Edited by DorisandDave on Saturday 8th of May 2010 06:10:18 AM

-- Edited by DorisandDave on Saturday 8th of May 2010 06:10:45 AM

phyllen · RV-Dreams Family Member

Update - we are leaving next Saturday, the 15th. I can see a weight lifted from Leonard.

This past Monday was horrendous. We got there at noon. Between noon and 2 am she asked to either be moved to another chair or use the toilet 29 times. We put her to bed at 10. She called us for something or the other every 15-30 minutes until she finally settled down at 2. Once it was because she wanted a different nightgown on.

Mom has always demanded lots of attention. It is multiplied now.

My own mother in NJ uses a walker. She is now suffering from gout. A therapist comes in three times a week to walk her around and do exercises. I tell her she better follow every direction. She is, thank God.

There is no way I would put my children through this.

Postalpair · RV-Dreams Family Member

Our hearts go out to you......My husband and I both know what you are going thru. There are so many hard decisions to make.
Sending up prayers for you and your husband.....

Take care, and hopefully we will see you on the road biggrin

ali1257 · RV-Dreams Community Member

Hi Phyllis and Len

My heart goes out to you during this ordeal. My husband and I both had parents that dealt with cancer during their last few months. Each were very different.

My mom lived in San Jose and I was up in the Pacific NW. My younger sister, who has lived with my mom for most of her life became the martyr in our family, stressing how much she did for my mom but would never take any help from anyone, not family or other caregivers. By the time my mom died in Oct 05 she had pretty much excluded me from my mom. It was only because of my aunt (my mom's sister) that I knew what was going on. And for that I am very thankful.

With Ron's mom, she had been declining in health for many months and eventually went on Hospice on 3/24. Hospice came in two or three times a week but the family, four siblings and two in-laws, took care of her around the clock. Because we had our own business my husband spent most nights with her so the others who worked outside the home could sleep and be able to go to work. One sister went on FMLA for that month. It was a long hard road filled with lots of roller coaster emotions.

Each situation was different and we did what we needed to do in our own way. I hope that you are able to get on the road on Saturday and do the things you have scheduled. Know you have done the best you can in the only way you know how.

Ali

foxriverguy · RV-Dreams Family Member

If your doctor orders her into Assisted Living, it makes any family debate a moot point. Do you really think your loved one wants you to give up your dreams?

Shedule an appointment with her physician and explain what is going on. He will most likely give you what you need to get her into the hands of people who do this an occupation. What you are now doing is subjecting yourselves to uncessary stress and guilt. This is unhealthy for you. If you get sick or involved in a debilitating accident because you are tired, stressed and worn out -- you may never get to do what those of us out here enjoy every day: OUR OWN LIFE.

phyllen · RV-Dreams Family Member

George and Sandy - Unfortunately, yes our loved one does expect her children to give up their lives to tend to her. This is not unusal behavior for Len's Mother.

We talked to Hospice nurse tonight. He says he would expect her to live at least a month, probably more.

It sounds so cruel but many of usl feel we are sitting around waiting for her to die so we can live our lives. But that is really how it is. We refuse to do that any longer. We are taking off on Saturday with a belief that she will be with us for a long time to come.

That being said, we are prepared to be called to return back here again in the near future.