sad news that has me very scared and depressed

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Hello,
Perhaps by posting here you will find some relief - as I am certain everyone here DOES understand you, be it a PALS or a caregiver. As long as we are all honest with ourselves and within ourselves.
True, everyone here is participating in a dialog, which often takes many turns. In reading your outpouring emotional post, I can not help but feel the only support you will get would be from here. It would be presumptious of me to try and speak about your husband. People deal with disaster in such diferent ways. Do what your heart tells you you must. Feelings of hurt and sadness most often give way to anger, if not tended to. The road ahead of you is hard; the way your husband is looking at it - you still have a road to traverse on - for him, only a dead end. Takes a very strong person to overcome that feeling of futility, or very loving. And often, time brings about changes.
To use Carol's words: "Stay strong!"
Upila
 
Thank you very much for everyone's kind words of encouragement. My children 10 and 13 seem to be adapting well to the 2 separate home situation. We will have some counselling for our broken family.
My nurses have been working overtime and training new staff. However we are still waiting for the insurance to approve/provide 24 hour nursing services because the public Healthcare system can't fulfill the 43 hour/week of nursing services that I am approved for. In the meantime I will have to be admitted for respite care for the Christmas holidays to give my nurses and parents a break. I am terrified by this but cannot really talk to anybody about it because I don't want to make anybody feel guilty!
My husband had become very aggressive in my care for the last year/months. He is a cop and would only be this way when no one could witness what he was doing. So the person who posted that challenge; it is very difficult to be loving or thankful when he slams your head in the mattress because I needed my BIPAP mask off to get pain medication medication for my stomach, made me so nervous I had to take sedatives, ... continually made threats, motioned in the intent to hit me, lied and ignored me; being cared for with so much animosity and resentment is/was too much for even a tough cookie like me.
My family feel that he is not honest about his intentions and all suspect that his ultimate plan is to set things up so that I have to placed in a Healthcare institution. Unfortunately I fear that looking back that he was planning this for a long time. His family has been encouraging him, saying that 7 years was enough of caring for me. They had even taken life insurance policies on my life right after my A.L.S. diagnosis in '98, I guess I was not dying fast enough for them to cash in! Family dynamics were never never healthy in regards to me, I was not what they wanted for their son. \Anyway I am thankful for what I have and take it day by day! I will keep your posted.
Patsy
 
Dear Patsy,

I did not target my response at you, as you may notice my first concern was had you found help. Nobody should ever be in an abusive relationship, and I believe you will find that you are better off without that, I am very sorry if I came accross as "harsh", that was not my intent, I was just hoping to make people think, rather than wait, and if just one person turned and thought yeah, it has been awhile that things have been a little crazy and out of hand, and if they just took that one step to rise above it all and make a choice to see the good or do one little thing that even makes that moment better, for themselves and their loved ones.

I keep telling myself it could be worse, my children are healthy and overall happy.... This is the one of the most difficult things a person can go through, as if the disease itself is not bad enough then comes all the emotional "STUFF" it is very difficult, there is no magic pill! But intent goes a long way.

I sincerely wish you the best.
 
cbrink;
I understand what you're saying and I am so emotional right now that I took your comments the wrong way. Sorry!
I am finding that what my husband led me to believe that I was so terrible and alone, was not true! My family and friends have been a tremendous source of loving support.
My only fear is that one day my boys will ultimately discover the truth about this situation and I pray that it won't affect their relationship with their father!
I am very blessed being surrounded by a great support system despite my present situation!
Patsy
 
Patsy I don't know why these horrible things happen or if there is a purpose to all things..but things just are and we cope with what we have and adapt as best we can. You are a tough cookie and a tribute to your kids. I'm sure you did the best you could raising them, and don't stop now. Kids see much all the ways up to that age and they will not forget the time you spend with them now and moments from the past.

I told my mom 54 before she died from ALS that she didn't have to worry about dying because she will always live on through me. I know that I have grown 10 fold from all this and I will always remember how strong she was to face such adversity. Know that your kids will see and grow from your strength too. That's something that can never be tarnished by what others my say.

Do all you can do now! Think smart cookie, write them letters, put your people to work. Santa's checking his list make sure you go over yours. Are you forgetting anything? You can still put things into plan.

- Ben 29
 
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I am back home from a 2 weeks respite care stay in the hospital and it was not a bad experience. During this time my boys unfortunately have come to realize their father's lies and manipulations, while I was away. I have have told them that I could not control their father or what he says or does. There is another woman involved and they are very upset about that.
I have been so stressed out with all this, my nerves are frazzled. Thank God for sedatives.
Patsy
 
Hi Patsy,
It was good to see your post. You have been on my mind prayers since your last posts.
It is good that the respite care was not a bad experience, at least that is one positive thing!
You cannot be responsible for what your husband does, I know how hard it must be on your boys, but what a strong, loving mom they have.
Love and prayers,
Leah
 
Patsy,
You sure have had a lot on your plate. I know you are probably physically and emotionally drained. Like I said before, I don't know your situation, but to me, your husband sounds like the weak one (and you are the person with the illness)! Keep focused on your boys. They are very lucky to have you for a mom. I hope they see right through your husbands decisions.
Dana
 
Patsy I am so sorry that you have to go through this while dealing with this disease as well. I agree 100% with Dana your the stong one and he is the weak one... Your boys will figure all of this out in time. Stay focused on the boys, your health, and you will overcome all of this. You are and will continue to be in my thoughts and prayers.

Jen
 
Hi Patsy,

When God closes one door he opens another. Don't forget that, it will happen..... I know it! My prayers to you and your boys.
 
Hi;
I survived the hospital respite care over the Christmas holidays. The nurses were very good to me during my stay there. It was hard for me nevertheless.
I am home for now with nurses with 24 hour insurance coverage for the nursing services. Although we are just covering the required shifts with the staff that I have now. So if one is sick, I may may need to be admitted for more respite care because of inadequate staffing. So I am still looking for staff. My nurses have been real angels through all of this, to me they're family and not just staff!
my husband is still living with his parents and the boys are being looked after by my family, in-laws and I. The boys are upset by what is going on but are able to talk about their feelings to me and a counsellor. I am getting counselling also.
My husband finally saw his doctor today and finally accepted that he has a mental health problems. So he is waiting 3 weeks to be placed in a mental health rehabilitation institution for a month or two. Hopefully they treat him and that he accepts the diagnosis, so that he can be compliant with the treatment plan. Let's hope and pray that the problem is identified and properly treated.
Anyhow I am very relieved that he is getting help for the sake of my boys.
Keep us in your prayers!
Regards;

Patsy
 
Patsy are you out there? Did you make it to this forum?

Just wanted to check in to see how you are doing.

Been thinking about you a lot.

Take care.

Richard
 
Patsy,
My heart goes out to you. I think you have brought us all to our knees ,, so to speak. There are no right words to say ,, the best we can do is give you our support and lend an ear. I am sure he is burned out,, but one day he will soooooooooooo regret this. He is turning his back on you now in your time of need. And one day someone will turn their back on him in his time of need. It may be friends, his own sons,, or maybe even God. After all ,, what goes around , comes around. You hang in there,, and feel free to vent here any time. I am alone in my battle with this ALS too. But for me it's because ,, i am widowed,, however,, my husband might very well have did the same thing as yours. We didn't have the best marriage in the world. I live alone for now,, but my children will take care of me ,, when the time comes.

I understand your hurt and anger,,and rightly so,,,, but he is to be pitied,, for his self-centered action,, will come back to haunt him. And i would not want to be in his shoes when it does. God's wrath is far worse than anything we could do to him. So i pray for both of you,, that he has a total change of heart and mind.

Love and Prayers
Marlo
 
I am home

Update
I am back home from a 2 months respite admission to the Kapuskasing Extendicare for 1 month (I was given a days notice to move to the hospital because of my ALS care needs were too high for the nursing home patient staff ratio and the CCAC placement coordinator thought that I had 6 nurses that was false anyhow not a nice experience) and Sensenbrenner Hospital for 1 month (1 week on active care which was not nice and 3 weeks on LTC which was positive) , with a new group of nurses and a previous nurse from before, our kingpin senior favourite nurse! I am very happy to be back home.

New staff are quick learners, having cared for me in the hospital. Nevertheless a very different environment from the home, their training consisted of a 2 days shift training and none for the night shift, they did a fabulous job ! This is very different from before, where there were weeks of training. Anyhow, the atmosphere is much nicer for everybody here. my brother-in-law is in charge of the staff and my family are intergral part of the reason enabling me to be home! Placement in a Long Term Care institution didn't take place as some ill wishers had planned for me. The boys are thrilled that I am home.

The boys are with their father presently at my in-laws, while we are in the training of the new staff. Once things settle down we, with my family's help, will establish a routine for the boys staying over.

I had not spoken to my husband since January and it has been a lot less stressful for me in the long run. It has been better for the boys because he can not get me upset and there no fighting and no blame Patsy game! If there are problems, my brother-in-law deals with him directly and the boys are more verbal in expressing their feelings when he starts behaving irresponsibly, so I don't have to deal with him for the moment.

The boys are telling me again that they are not impressed by their father's relationship with yet another woman since he has been home from Homewood. I am thankful that she has been nice to my boys and seems to not be mentally ill like the last one !

I am sleeping a lot better since I don't talk to him, I wake only 2 times per night and compared to the 6 times per night when he was home with his abusive sneaky lying ways of the last 3 years. I guess that I didn't realize how much of a negative effect he had on me over the years, many were unaware of what he was doing because he would make sure they were no witnesses to what he was doing to me. So I am slowly feeling better with greater quality sleep and greater sense of security/safety.

I got a sit to stand lift last week that I got to use at the nursing home . It exercises my legs and according to the physiotherapist I am getting stronger with my legs and buttocks; so I am still improving despite everything. I can now focus on myself and physical rehabilitation without any emotional and psychological attacks. I will have a formal assessment by the physiotherapist in a month, I will have to keep you posted.

Regards;

Patsy

Patricia Seguin-Tremblay,
Ontario, Canada
P.A.L.S. since 1998
P.A.L.S. (Person with Amyotrophic Lateral Sclerosis)
 
Great news Patsy. I have been wondering how you were doing. You just keep on working on those buns of steel and get stronger. Take care. Al.
 
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