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By thrutheringer On 2009.07.04 23:54
Well I have never participated in any kind of forum but came across this one by accident and after reading some of your experiences I thought I would bounce my situation off of whoever would care to read and respond.

I am a 70 yr. old male. In 1991 I finally found my princess and lived a fairy tale life until PD set in 4 yrs. later. Or was it PD? Since 1995 11 Neurologists and 2 days of intensive testing at Stanford University diagnosed her disease as "a little Parkinson's and a whole lot of something else that is helped by Parksinson's medications." She lacks 2 major symptoms of PD. No shuffling of the feet...no rigidity of the limbs.

The next 13 years was filled with a diet of 10 different medications constantly being "tweaked" by many Doctors which resulted in the following.

1. Hallucinations....she saw mice taking over our house. I witnessed her stabbing the ice maker with a Ginzu knife while in a squatting position. stabbing the garbage disposal. shaking her shoes furiously to make sure they were not hiding in them. Saw mice "dancing" on the dresser in the b/rm. After calling her family over to the house to verify they were not really there, she became angry at all of us for not believing her. Would spend a whole hour at times in the garage "staring at all of those beady eyes of the mice". I never knew when I might look like a mouse and be stabbed in my sleep.

2. Forgetfulness. Each day found us looking for the checkbook, her wedding rings, bill payments being sent to the wrong companies and NSF checks charges at least monthly. I of course was blamed for not making enough money. When I attempted to take over the bill paying she became very angry and I backed down.

3.Straying. We lived in a mobile home park and she would disappear within the confines of the park for up to 2 hrs. Once time I cooked dinner and told her it would be ready in 15 min. and she disappeared for 2 hrs. She later said "I can't judge time well."

4.Bad judgement. Wrote checks without money in the bank. Called the bank daily because she thought they made an error instead of her. I awoke at 2 am one morning to find the front door wide open....she and the car was gone. Turned out she had our German Shepherd with her as she was pulling weeds and Max had taken off so she went to look for him. He was found the following day.

5. Pharmacy. Would go to pick up her meds and there was always a problem. "That's not what I ordered" she would say to them. They would tell me on the sly that it WAS what she ordered.

In 2008 the hallucinations returned. Many nights of staying up with her because she could not sleep. She would handle glass, silverware and knives frequently cutting herself as well as falling. She was constantly cleaning the fridge with a toothbrush..at least 3x week because it was so dirty. Many nights I would awake at midnight to discover she was not in bed and found her cleaning out the cupboards with all of the contents lined up on the front room couch and floor. I have even found her sitting on the floor with her family pictures talking to them as if they were present. I admit I became angry at times and ordered her to bed later realizing that was the wrong way to handle it. The next time I decided I was going to be strong and loving. That opportunity arose soon when I awoke at 1 am finding her in the kitchen cooking. I kept my cool and engaged her in a conversation. "Why are you cooking at 1 am in the morning?" "Because all of these people stopped by and they are hungry." "What people, where are they"? "They are sitting at the dining room table." I accepted that and she then tells me more ......"you know what bothers me? I am in a John Wayne play tomorrow and I don't know my lines." I told her to "just do your best and they will understand."
Oh did I mention I rubbed the cramps out of her legs in the middle of the night when she was in bed?

She then announced that she was tired (6 am) and didn't know where all the people went that she fixed dinner for. Afterwards I saw what she cooked for dinner. Small pieces of wheat bread with dollips of jelly and peanut butter. By the way no sleeping medication was prescibed that worked or failed to cause problems.

I did all the shopping and cooking. I could hardly ever get a grocery list. She would forget to make one. If one was made, important items were missing. I had to return and get them. Her Neurologist thought it best for her to get a dog. We obtained a "Mini-Schnauzer" that bonded with me instead of her, but because of her inability to get up and let her out she became my responsibility as if I needed more.

I am the type of person who holds stuff in and then vents when I can't take it anymore. So in August I vented and said things that I regretted and later apologized for. Actually I feel I was totally justified but she disagreed.

I would like to say at this point her family was non involved in all of this and didn't seem to care or realize how bad she was. I always got along with all of them.

So what am I leading up to? In September of 2008 she insisted on me taking her from Northern Cal. to Kern County to her brother's funeral. Since I had to go back to work and supplement our SS income, I thought I should not miss work and also there was no gas money for this trip. She became hostile and pulled out a credit card that I had no knowledge of and said "this will pay for the gas". She loaded up the car with much more stuff than she needed for a two or three day trip. I decided to leave her and not miss work in Northern Cal. and pick her up two wks. later so she could visit with family. Guess what? Her family coerced her to stay.
They have totally turned on me and vowed they would never let her return.

She said "I can't come back because of your anger. You scare me." She then called me to tell me "I want to come home but they will not let me." Her next call was "I don't want to make my sister mad at me. I can't come home." The call after that was "I wished you loved me enough to let me come home." Many calls after that were of how unhappy she was, how her family is mistreating her, controlling her meds and placing her under house arrest so she can't go outside. She even asked me "what do I have to do to get another chance with you?" Two weeks after living with the sister, she was placed in a independent living facility. The monthly rent for a studio apt.WITH meals is 900.00 a month. Her SS income is 700.00 per month. Guess what she wants me to come back no doubt to help with the rent.

It was necessary to sell our little mobile home in Northern Cal....I am now 2,000 miles away in the Chicago area staying with family. I told her that I cannot take this anymore and need a rest for 3-6 mos...I am fragmented, feel somewhat guilty for choosing to be away like this and find my emotions are running wild. I sometimes feel I should be more understanding....maybe most of this is caused by meds.... I realize her condition is deteriorating and maybe she is not responsible at all for her behaviour. Her family feels I am selfish for considering my feelings since she is the one that is so sick and I should be with her. Not away from her. But how much of this pressure should one tolerate before considering their own health?

My family feels that I should not return. Cut the cord and let her family take care of her since they sabotoged our marriage. I cannot seem to find peace with staying away or going back. I have never ever been in such a state of indecision in my life. It is down right miserable. I even sometimes wonder if I am "losing it". I constantly replay the tapes of the above mentioned situations. I even dream about those same scenarios. I am becoming forgetful, depressed and sometimes very angry. I still love her dearly. My head says do not return. My heart says return. I have only mentioned a fraction of the events of the last 14 yrs. there is so much more.

Oh yes, I have congestive heart failure, Hypertension, and just underwent my third angioplasty with a second stent inserted in my right artery. I also have been recently diagnosed with diabetes.

I am aware that in the light of all of these other messages my problems pale in significance but I am thankful to be able to vent how I feel.

thrutheringer...........and then some

By lurkingforacure On 2009.07.05 01:06
Hi and welcome to our forum. You should already realize what a wealth of information, compassion, and experience is here, and you came to the right place.

I am flabbergasted by your post and really dont' know what to say except this. Try to think of how you need to act now to avoid regret later. If you feel that would be to be with your wife, then reunite, but I would make her move out of that facility so that you are away from her family who may interfere again, and closer to a support network that you will need now and down the road. I certainly cannot see paying the difference in her room and board when you are not together (being a lawyer, I have to add that in, sorry). It's one thing to share finances when you are living together in the same place but not when one spouse is here and the other there, under your circumstances.

PD sucks the life out of everything it touches. You probably already know that, and realize that your own health does not sound that great. If you reunite, are you physically able to take care of your wife, and if not, can you afford help and/or get resources to do so? You may want to carefully consider the logistics of each option you have so that you make the right decision for your situation, and there are less surprises.

You will find lots of support and help here so stay with us, we all learn from each other.

By thrutheringer On 2009.07.05 06:26
Thank you Lurking for your response. I do appreciate it.

May I also add that I acted as my own attorney and filed for Legal Separation in January of this year. (I would never recommend this to anyone. Get an attorney) I did this mainly to protect myself from any indebtedness she might incur based upon previous irresponsible actions. Three weeks ago I decided to cancel this because it deeply wounded her plus her family now controls her finances and has power of attorney which she is now attempting to void. This is on top of all the other "stuff" I was experiencing.

No I am NOT sure I am up to taking care of her again especially in hostile territory with her family. It would involve moving her out of her present facility and into a apt. where she would be staying by herself while I work. Yes this would require me to leave retirement and get a job. Also her family would probably be furious and not be willing to assist me.

Ironically the marriages and personal lives of those who are so harsh in their criticism of me are sadly lacking and have been for years. Also in 2008 I offered to move her back to be near her family because I was overwhelmed and would welcome their support and help. I even had a job lined up. She dug her heals in and refused because she wanted distance between her and them for personal reasons. This added to the shock value of what she did.

Also I could NOT afford to hire help unless I was employed full time. If I could even find employment at this stage of the game.

And yes.....I feel the life is being sucked out of me. A great way to put it.
thanks again for your candid response.

ps.....I am thinking about ordering that bicycle advertised on the internet. It has no seat or handlebars. It is for people that have lost their A......and don't know which way to turn.

By Tara On 2009.07.05 13:21
Wow. When I first read your post early this morning, I didn't know how to respond, so I decided to sleep on it to allow my thoughts to consolidate.

My first and most overwhelming thought is that you need that 6 month "rest" you spoke of (it sounds to me like you need much more than 3), and I agree with your family -- cut the cord and let her family take care of her during that time. I know it sounds selfish, but there is a difference between selfishness and setting proper boundaries. You have to figure out where you end and she begins. You MUST consider yourself at least some of the time.

Her family is wrong when they say that your feelings don't matter because she is the sick one. What they don't realize, or care about, is the fact that as a caregiver of a person with PD, you are, in fact, also "sick." Like Lurking says, it sucks the life out of everyone. That means that it is not only the PWP who "has" it.

You say it's ironic that the harsh, criticizing people in her family also have relationship problems, but that's really not ironic at all. If they knew how to have healthy relationships, they would know how to include their loved one's husband in her care for the best of ALL concerned.

Like I said, you really need to take an emotional and physical break from all of this. Stay with your family during that time. You need the care and advice of people who love you, and will not criticize you.

You will not be able to save her family, and you may not be able to save her or your marriage, but at least you can save yourself!

By thrutheringer On 2009.07.05 19:43
Thank you Tara for your advice. I have been here in Chicago since January and am just now feeling a little whole again. I am also realizing what I have been under for 14 years without a break.

The thought of returning soon scares the daylights out of me. Maybe my self preservation mode has kicked in.

Thanks again for your input.

By annwood On 2009.07.05 20:29
Hi, welcome to our forum. You will find compassion and understanding here.

My thought is that you need to take care of yourself. If her family wants to be so involved perhaps that is best. It sounds to me as if your wife has dementia and/or Alzheimers but I am not a physician. Much of what you describe is what my husband was doing with his PD dementia - it does not get any better, only worse. If her family has POA you will not be able to take her with you without a hugh court fight. Are you up for that?

Rest those 6 months and get your life back together. I think that I would continue the proceedings so that you are not financially responsible for what your wife or her family may do. Again, only you can make that decision.

From what you say, you were a very good husband. I am sure all of this hurts you but try to remember that this is not your wife but the disease. If you have her with you it will require that she be supervised while you are working and that is very expensive. She may even require nursing home placement as she declines.

Stay with us and we will try to help you sort out all of this.

By thrutheringer On 2009.07.05 23:00
Thanks to you annwood for your thoughts. My situation has many variables that can only be sorted out in time I am afraid.

I value all the advice and opinions of others. I don't feel so alone now.

By annwood On 2009.07.05 23:25
You are never alone here. Do keep in mind that only you know all of the facts and only you can make these decisions. This is like an ongoing dialogue with friends. Say anything you want - no judgements are made. We all have different experiences and we all approach things from a different perspective. We are friends united initially by a dreadful disease.

By lurkingforacure On 2009.07.06 08:07
Ringer, it has also dawned on me that perhaps your wife's family realizes that you are not able, physically or financially, to care for your wife, and they are stepping in...in that case, it's a blessing to have that help.

You do need to continue the court proceeding, your wife could be incurring all kinds of debt you will be liable for unless divorced. I hate to say it, but in Texas it's true. I can tell you that my sister in law got a "divorce" only to find out five years later the divorce was invalid because my brother was not served the papers correctly, so the five years of child support she was trying to collect were zippo, not to mention all the debt my brother had run up that the bill collectors were trying to get her to help pay, and to top it off, SHE had bought a house after the "divorce" that HE had a claim to! It was a nightmare. Don't let this happen to you: get things cleaned up as you make your decision, you can always reunite if you wish but at least this way the waters won't be as muddy regarding the interim.

By WitsEnd On 2009.07.06 09:43
I guess the first thought that came to my mind after reading your post is "wow". I am not certain, but I don't believe that you can divorce someone who is not mentally competent. You definitely need to get a real attorney--one that specializes in family law--ASAP.

Nobody can tell you whether to hang in or abandon ship. That is a choice you will have to live with--but you do have to make sure that you CAN live with it. You need to take care of your own health and safety first--then you need to decide what to do about her.

I would recommend talking with the attorney about filing for a non compos mentis hearing and guardianship. The court will appoint an attorney to look after her best interest, she will need to have a psychiatric evaluation--and if you are successful you will be appointed her guardian and can make her care decisions on her behalf. Her family may contest this and it may become expensive so you will have to play it by ear. In any event the court will make a formal determination as who is responsible for her care.

Doing this though in two different states is going to be difficult. I would recommend that if you want to take this on that you talk to the attorney and then arrange to get her back in your state for the proceedings. It sounds as though she needs something significantly more than assisted living.

You didn't give enough information about her family and you situation to tell me if her family thinks they can get any of her assets by doing this--or if they think they are doing what is best for her and you. I would think though if they were trying to do right by you that they would have opened communications up with you rather than handling this the way they have. I know it is hard not to take her behavior personally, but she sounds like she is really sick. If this is the case, then you really should try to do your best not to hold it against her.

We'll be praying for you.

In the meantime I would suggest cutting off all credit and putting a watch on your credit bureau reports so nobody can open credit in your name without your knowing about it.


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