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Topic If I would Have Known Then What I Know Now :( Go to previous topic Go to next topic Go to higher level

By VegasPDCG On 2014.10.04 01:12
This message is probably going to sound terrible and selfish. If anyone takes it that way I understand. Flame away! You can't possibly do or say anything to me that will hurt me in any way. I assure you of this :(

I found this forum Google Searching. Very nice forum.

/rant on

I have been married to my wife for 18 years. Been together for 20 years. My wife and I live in Las Vegas.

In April 2014 my Father In-Law moved into our house. (Different Long Story About This)

My wife's father is 70 years old and has stage 4/5 PD. He was diagnosed about 10 years ago. He was recently diagnosed as now moving into stage 5. He is 99% incontinent (sometimes he can make it to the bathroom) but usually can not. He is 100% wheelchair bound. The only walking he get's is when he transfers from the bed to the wheelchair, all of about 1 foot. That usually takes 20 or 30 minutes to move him a tiny ol' 12 inches :(

He has trouble eating sometime's but so far can still swallow. But his appetite has drastically diminished and continues to do so every week. No matter how many times I tell him he has to eat to stay strong he ignores me. He still has some decent weight on him but if he continues to not eat complete meals he will get sick. I had a Huge fight with him and my wife over this tonight.

The fighting between my wife and I seems to become more frequent. Divorce seems almost imminent at times but then I try and think straight. I am hopeful my marriage will be intact when this is over. I feel bad for saying, "When this is over"

When Father-In law moved in he was still able to talk clear, walk with assistance, eat with minimal assistance, falling was minimal, appetite was strong, attitude was better, wife and I still loved each other, etc... I thought by moving him in with us we would be able to provide him with better personal care than the horrible nursing home he was at. I wonder now if we are doing more harm to him than good because his medical needs are so demanding and strenuous.

He has a Dr that see's him once a week at home and a worthless Neurologist at the Cleveland Clinic that see's him when he is not on the road participating in seminars, which comes out to about once every 3/4 months. He also has a PCA that see's him 2 hours a day to help clean him. That is also another horror story...the PCA Companies.

My rant is about all my emotions regarding his life and my own personal life. I am torn because I am watching my dear wife who I love more than anything tear herself apart trying to manage this whole thing. I assist wherever I can but still we bump heads and fight constantly.

I will do what my wife asks me to do to assist her with her dad. But a lot of time I feel like my wife does not know how to look at her dad through the eyes of a caregiver and not always through the eyes of a loving daughter.

If I had known then what I know now I feel like I would have left him in the nursing home where he already had routines in place. What have I done? :(

/rant off

By ResistanceFutil On 2014.10.04 09:39
Definitely sounds like a tough situation, and one sure to generate intense emotions. Sounds to me like the eye on the prize should be the relationship with your wife. Watching your FIL struggle is no doubt difficult, watching the struggle and turmoils your wife is experiencing as she deals with this may even be harder for you. Hopefully she knows you're willing to help, and appreciates your assistance.

There are 70 years of family dynamics going here as well as the devastation of late-stage PD. all three of you deserve some compassion and understanding in this very difficult situation.

By carman96 On 2014.10.04 10:32
Find out if there is a caregiver supports group near you and see if you can get your wife to go. The area agency on aging started on here and they also send a caregiver while you are at the group. It is for caregivers of people with chronic illnesses. I've found we all have the same things in common. One of the things the therapists are helping with is when is it time to choose a nursing facility. If the persons medical needs are too great or if its not safe for them. It is awful the guilt and confusion .causes for the caregivers. My husband is not there yet but I realize he might be someday. It is heartbreaking But sometimes it is the best thing for the loved one.

By jcoff012 On 2014.10.04 14:00
Vegas, I am so very sorry that your FIL's PD has brought such chaos to your lives. PD can be unbearable under the "best" of circumstances, but when it starts invading upon your marriage, it must be heartbreaking as well. My husband is my PWP and is not at the stages to which you refer, but we had a 22 year plus journey with my MIL...My brother in law became her primary caregiver in her last year of her life and he was constantly telling me he "hadn't had a break from PD for....days or .....days..." I used to want to cry with him. We live across the country, but would fly back several times a year to give him a break and saw what he went through daily.

I am sorry for your pain and I know that this situation seems taxing at best, but perhaps you and your wife need to sit down and discuss your options for her Dad. Indeed, there are options, right? You mentioned a horrible situation in a nursing home, but as someone who worked in an assitant living and trained in several nursing homes, I KNOW there are many excellent ones out there, if that is one of your options. If together you decide to keep her Dad in your home, is one option to get competent care to come in on a regular basis?

One thing I see on this board is that the caregivers often do not like the hired caregivers or the caregivers in a home or assisted living...that is a situation which should NEVER be tolerated...Your father in law has the right to competent, compassionate care and if the first ones are neither, you need to find others who are...trust me, there are MANY good ones out there.

Next, please find time away from PD for both you and your wife. Make the time to be together. Alone. Away. It would be well worth any extra money spent to find someone to make this happen...You need to rekindle your love and keep it strong through all of this.

PD is endlessly cruel to everyone involved. But, it certainly is more cruel to the person who is suffering the most, the PWP...This person deserves our respect, care and love.

You are honroable for taking in your FIL. You wanted to do what you felt was the right thing to do. Perhaps after you both sit down and discuss all of this, you will come to a different solution than any you are currentlly considering...perhaps you will remain status quo...Whatever you decide, please do it after time away, a good night or two of sleep, and with the compassion and love you originally *and still* have in your hearts. Hugs, Jane

By dans316 On 2014.10.04 17:07
Vegas,
My wife is my PWP, diagnosed in 2006. She has very similar problems as your father in law. She lost about 20 lbs over the past6 months, eats very little. She did have a swallow test and did have a problem with silent aspiration of liquids, but was fine for solid food. What I've noticed is she takes a long time to swallow her food. Normally when we chew food, the muscles in the mouth help to move the food to the back of the mouth to trigger a swallowing response although it is a lot more complicated than that. PWP lose muscle control and can't eat normally. Also I seem to remember that one trick for losing weight is to eat more slowly so maybe it follows that for a PWP eating slowly, they think they are full sooner. In my wife's case she has ill fitting dentures and the dentist recommended replacing them to aid her chewing. She has agreed to the new dentures, so we will try them.

She is also wheel chair bound, but I do walk her around the house, holding her while walking backward. Since she only weighs about 78# now, it is easy for me but for someone weighing a lot more it might be a problem.

She is also 99% incontinent, so as I said there are similarities. I'm determined to keep her at home as long as I am able although I often have doubts that I'm giving her the best care.

I had posted this link in another thread, it gives some info on PD and swalloing and oral health in articles 2.2 and 2.4.
http://www.parkinsons.org.au/about-ps/about-pd.htm

Hope you can work things out:)

Dan

By moonswife On 2014.10.04 17:54
Dear Vegas,
If it were you instead of your father in law would your wife take care of you? Do you think she would divorce you because she has seen the future and it is never pretty? Would you take care of her if it were her? Do you have children to step up to the plate to take care of you if you divorce. These are tough points to ponder, but most of us deal with the same issues you post on, and some of us are still working to pay the bills at the same time. Just sayin.

By jcoff012 On 2014.10.04 20:59
Dan, never doubt yourself. To those who have come to know you, you are a blessing to June...and to many of us. We are all in this together, but there are a few who shine because of their devotion and positive attitudes....you!

By brainstorm On 2014.10.07 11:38
I know exactly what you are going through. What you are doing is very noble and compassionate. Your wife is very fortunate to have your support. IF your FIL qualifies for Medicaid, he will be able to get on to the long term care program for your state and get a certain number of hours of care for him and even respite care so that you and your wife can get some time to yourself. If he does not qualify for Medicaid, if you are financially able to have a caregiver come in for more hours, by hiring it privately rather than going through and agency would be the way I would recommend. That is what I did for my mother. It is never easy to manage caregivers in the home, but when the right one walks in, they can make everyone's lives easier.

Eating and swallowing are definitely problems towards the end. Perhaps providing meals that are soft food consistency may help. Sometime the lack of sense of smell has some to do with lack of appetite. It is better to give him what the wants to eat even if it is junk food than to not eat at all.

Hope this helps.

By VegasPDCG On 2014.10.20 14:21
@Moonswife

"Dear Vegas,
If it were you instead of your father in law would your wife take care of you?"

The answer to that is yes she would take care of me and I would also take care of her until the biter end. I made a promise before GOD to "FORSAKE ALL OTHERS" for my wife. I would never leave her alone if she had PD or anything wrong with her.

I should probably explain more about this situation. As I stated in my original post at the top...

"In April 2014 my Father In-Law moved into our house. (Different Long Story About This)"

Let me explain this side of the story.

My FIL deserted his daughter and entire family when she was 10 years old. He was one of those guys who said "I'm going out for a pack of smokes"....and he NEVER CAME HOME.

My wife and I have barely if not ever had much contact with him over the years. My wife has admitted several times that she doesn't even know the guy because he has been absent all of her life. Now when the chips are down for him he calls her out of no where for help.

Again, this is gonna' sound harsh, but we don't know this man. A lot of times I feel like we do not owe him anything. I am not saying I do not have compassion for him, obviously I have taken him into my home at the request of my wife. I also feel extremely bad for him that he has PD.

This ties into my original "Rant" post above as to "If I would have known then what I know now"... I would have left him in a skilled nursing facility where he had routines down and around the clock nursing care.

My FIL has Medicare A/B and Medicaid as well with the MFTP (Money follows the person) for his in-home needs. He is technically his own ward as my wife nor I have any POA on him and have no plans on getting one. My FIL is what his social worker has called a "Full Ride" Medi/Medi patient. I assure anyone reading this post that he has more resources at his disposal than most other people in his situation.

@Moonswife

I have a question for you. Would you take care of a late stage PWP that is a total stranger to you? Would you willingly turn your life and marriage upside down for a person that is a stranger?

Would you?

By moonswife On 2014.10.20 23:14
Well, in your /rant on, rant off you explained none of this. It puts a much different slant on the story of the man you originally described as your Father in Law that your loving wife loves.
I had a Dad that was very abusive. I left home to go to college and did not return because I was the butt of his abuse. And when he had a stroke at 51, neither my Mother nor my sister stepped up to the plate to offer care. So I hauled two toddlers to a nursing home twice a day to dress and feed him. He remained a high care patient for 3 years. I resented my sister with no children, that lived in his area but "could not stand the smell" for her non participation. So yes, I do know how hard it is to care for a "stranger", or worse my abuser. Would I care for a total stranger? Not unless I were a health care worker. I cared for my Mother for eleven years. Now my husband for almost 10. The more information you imparted the more I felt differently.

By lurkingforacure On 2014.10.21 07:45
I've stayed away from this because I wonder how much anyone can offer who has not walked or is walking in your shoes. That said, I think anyone can see why you would feel as you do.

In the big picture, none of us want any regrets. You don't want to kick him out and have your wife resent you for it later. Nor do you want to keep him in your home, while the resentment builds to unbearable levels, which is impacting you and your wife now and possibly continue in the future even when he is no longer living in your home (for whatever reason).

It is possible that your FIL and wife may find peace between each other, and your wife forgiveness for a lifetime of betrayal by her dad. That would be the best outcome, and surprise gift, that could come of your situation. I do have some experience with this, and know that it is beyond words to describe the peace one feels when they have reconciled/forgiven/made peace with someone who has hurt them before that person passes away.

And making peace can happen anywhere: your FIL need not necessarily live in your home in order for him to make peace with your wife.

I guess my point is: no regrets. Life is short. We all make mistakes, and no one can see the future, but I would be trying to do whatever it is that would allow me to have the least regrets later, whether that is tomorrow, next week, or next year.

I hope things get better for you and your wife, you are in a very difficult situation that most would have refused.

By VioletV On 2014.10.21 19:48
Vegas,
I read your follow up to the situation with your F-I-L, and I have to say (and forgive me if this is harsh and judgemental) that this man sounds like someone who is willing to inflict chaos and unhappiness on people who love him for his own purposes.

How is what he is doing (expecting you and his daughter to care for him, although he did not care for her) different what what he did years ago when he said (speaking with his actions if not his words) "what you want and need and value is not important to me -- this what **I** need, and you have to accommodate my need to leave because my wants MUST come first?

I wonder whether there isn't a healthier way for your wife to work through the pain of his abandoning her years ago than by reuniting with him. Yes, it probably fulfills a life-long wish to have her dad back, but, No, it does not restore the nurturing and guidance that she, as his daughter, deserved.

Especially because he has the wherewithal to be cared for out in the world he chose, instead of in the family he abandoned, you might put the effort into finding him the best care "out there" and visit him on YOUR timetime and in accordance with your marriage.

This is my .02. I think just as good as some potential peace between them (with all the effort coming from you and his daughter) would be the clarity that she does not owe him the sacrifice of her marriage and her own family life, simply because of biology and childhood yearnings.

VV

PS Can you tell that I had to find my own way to being settled about a father who failed me in spectacular ways?

By ResistanceFutil On 2014.10.22 16:46
My situation is much different from yours and this part is non-PD related. The family dynamics are the same though. My husband's adult children take advantage of him and do things that make him miserable. For years I tried to step in and "protect" him from his children. He didn't want protection - what appeared to me to be mistreatment was their SOP. The problem in your situation is with your wife and her relation with her father. The in-laws and steps- rarely win in any kind of situation like this.

It might be helpful to start looking at it more in terms of how your wife wants to relate to her father. If she wants to care for him in her (and your) home, in spite of, or even because of, their history and the way parent and child is/was defined in her original family, the issue you have is with your wife, not the FIL.

I think it's more than fair to let your wife know what you can tolerate in your home, but trying to protect her from her father or intervening in her relationship with her father is only going to be a losing move on your part. You trying to make the decisions for her father may not work out well either.

Hope you and your wife can work it out.


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