I broke my Father's heart when I eloped over 50 years ago,but one of the nuns I had had as a teacher told me I had to live my life even tho Daddy was not well(hence the elopment).I could respect my parents and help them, but i also deserved a life of my own and if it was a mistake it was my mistake .Abby, your main concern now is your DH. your parents will be fine.
Abby, it really does tug at the old heartstrings...the crying. Even though marriage is "leaving and cleaving",it seems that daughters are forever "daddy's little girl".
Oh Abby, the thing you must know is you did not break your Dad's heart, the situation you are in is. My Dad was torn up as well. He was Lynn's best friend also so it hit him really really hard. There were plenty of tears.... by my whole family.
However, It was my brother who finally made me see it was long past time to place Lynn. He is my oldest brother, so calm and loving. I don't think I have ever heard him raise his voice in all my life! Until the night the emotions were running high, I had just come home from the hospital after having yet another TIA .... he was a mess and I will never forget what he said "enough dammit!! We just lost Dad, I will not lose my sister too!!" wow, to see him break down like that, it hit me hard!
Your Dad clearly sees what you aren't. If he feels you are now a slave, that tells me you don't have enough help. I am NOT scolding!! I was the same way. I did try to get help, but even the state social service people said they would not subject their help to Lynn. eeeeek!! I missed out on every family gathering for far too many years. I never had time to do anything but take care of Lynn. Perhaps getting some help would not only help you, but ease your Dad's troubled heart. ((big hugs!))
abby--I feel for you. I was able to downplay my husband's dx to my Dad because Dad was approaching 90 when it happened, but he was still alert mentally. Even though I did much therapeutic fibbing to my Dad about DH, I know he still grasped what was going on and was worried about my future. I am thankful that my Dad passed last year at 97 and never had to know that I placed my husband in an ALF 2 months later.
From what I remember, your parents are relatively young and healthy. Although your Mom said you are a slave and there's nothing they can do about it--there is--they can help you. As we all know, even a few hours a week can mean a great deal to a fulltime caregiver. Perhaps in time they can come to terms with the dx and can be there to support you, or at least, contribute monitarily so that you can hire help.
My father has worked hard and the image of him sobbing is very powerful.
Nikki, I have never known you to be anything other than perceptive and compassionate. I don't feel scolded but I feel your support and appreciate it! andres and andy- thank you for your understanding.
Yes, marilyn, they are in their late 70's and are terrified that anything they leave/give to me is going to end up taking care of H and they really don't like him much.
It is a long story but Father had brain cancer and is now in long term remission. He is a "fighter". I could write a book about all he and Mother went through. They receive a lot of written information and internet communication and their orientation is that "you have to fight". They see H as selfish and lazy. This is not only because he lacks this fight, but they think that he should at least care about me enough to not want me to, well, let's just say live the life I am living.
They think he is being mean intentionally. I really believe they mean well, at least I want to think this.
Even if they sent me gazillions, which they won't, H won't allow anyone in the house, with the same spirit that he won't go to ALF because, of course, nothing is wrong.
marilyn, you are my template. N says that within the year H will become increasingly unaware of his surroundings and so will not resist placement. I don't feel it happening yet ...
Abby, I really feel for you and your whole situation. How well I remember the days of "there is nothing wrong with me!" Everyone told me to just get help, he would adjust. While that might be true for some, it was not true for Lynn. As I said, all agencies refused to even subject their help to his abuse.
It is so difficult when you know you need the help, but they wont allow you to get it. Before Alzheimer's I was Lynn's princess, he would have taken a bullet for me! Yet his diseased mind couldn't comprehend that I needed some help, and a break. So sad to be drowning in the stress of daily care when there are so many options available for help.
We know in their right minds they would say what most everyone said in the "what would you do if diagnosed with dementia” thread…. They would want us to hire help and to place them as soon as possible. They did not want us killing us ourselves, anymore than we want our loved ones to. I know that is what Lynn wanted. But I fought it, and fought it, until there was nothing left in me to fight with. Then when I did place him, I was eaten alive by guilt. Is crazy! But true.
It must be even harder on your parents where you are their only child. Of course this is not what they wish for you, and if they never had fond feelings for your husband, their attitude is understandable. I hope you are able to find a way to take a break. In the end Abby, you have to find a way to not only survive, but find some joy and hope. Without both, we have very little. ((big hugs of understanding))
Lovely advice Nikki, so simple, just that we HAVE to find some joy and hope among the survival.
I am sorry for your heartbreak Abby. With all my grumbling about no support, at least, my parents, though elderly, admire what I do, and they love my poor ill dh.
abby--I think the neuro is right. It is a matter of time before your husband will deteriorate and in some senses, be easier to care for. Psychologically, my husband became easier and easier to deal with as the disease progressed (that early stage was a bear)! Maybe it would help you mentally to have a game plan--start looking at facilities now (leisurely pace); see which ones you like/don't like; at least you will be working towards eventual placement.
This may be a long shot, but would your parents agree to some sort of family counselling with you and a professional? It just seems that there are so many issues involved that are complicating the situation. It sounds like your parents need some education about dementia from an impartial third party. Yes, brain cancer is a scary, serious condition but it is completely different than dementia--they need to hear that they have unrealistic expectations of your husband from someone other than you.
abby, i am sure your parents want to see you happy and a full life ahead as do all of us who are parents. it may be helpful to relay to them that its because you love your spouse and have a personal need to see him thru this. and that it could help you more if they may want to contribute a day or two paid by them? from an agency to help you get out to visit and a bit of 'me; time. maybe they want to help but dont know how. i hope it works out. and by all means enlighten them to the info on AD so they know what to expect. divvi
abby, my mom was very fond of Lloyd. I used to be an area manager and my office was 40 minutes away. Lloyd used to pass his spare time by taking her on lunch dates and spending time with her. I was so glad she was gone 3 months before his diagnosis. And the money she left me has been used for him. I added a third story to my house so my daughter and her family could move home to help me. I took him to Florida 3 times. I made our funeral arrangements and paid for them in advance. And I quit work to stay home and take care of him. When it comes to caring for your husband, the final choice is all yours in every aspect.
Considering my parents, it is late in my time zone on 02/25.
As a recipient from their calls tonight, I am just exhausted. According to Mother, counseling is the answer. With appropriate counseling H will reconcile the following: I am treating my wife poorly, I should got to ALF so that she can have her life back.
"You really need to divorce; he is making you crazy. Father and I are really questioning your reasoning."
Sure! He can't find his way to the toilet, or know better than to shave half his face (this is a new one), but yeah he is going to go to counseling, engage in cognitive processing and then everything will be fine, fine, fine.
It is like living here with him- no troubles, no worries, everything has to be fine, because of course, he is fine. God forbid I am upset or anxious or impatient, because of course everything is fine. The frontal lobes are basically non existant, but hey, no worries!
divvi- even if P's were to pay, and more than an aide I would love for someone to come in and clean. Exept that they would probably exit once the smell of H's bathroom hit- H would not allow them in.
Thank you Linda. I am going to ask, maybe on another topic- what effect do parents have on eoad, can they influence their children? Too tired to pursue that now but thanks for the spark!
abby--the aides I had while my husband was home did all my general cleaning, as well as laundry, keeping an eye on him, making his breakfast and lunch and making dinner for us when I asked. I had someone 4/hrs day for 5 to 7 days a week. It was a tremendous help and the main reason I was able to keep him at home for several years longer than many families do.
divvi hit on something when she suggested that you try to get them to understand that you want and maybe need to see your DH though this ordeal..but I would add...gently...in the same way you, Mom, wanted to see Dad through his fight with his brain cancer...and add that while it is an amazing miracle that Dad is in remission, without a doubt this will never be the end result for your DH...but gently said..
Mother has beat me to that. She says that Father at least has had hope of a restored life (again, because he is a fighter).
Since that hope is not possible with H, she questions what I am doing; says I am too depressed to have a rational view of my life.
marilyn,
thank you as always. Where did you find these aides? I fear someone would look at this house and just leave! Back in the day I had good luck with an individual housecleaner but not so much with "minimaids", "merrymaids" and such.
Then again, I grew up where I had to tidy things up BEFORE the housekeeper came- so what do I know?
How does Nikki do that "heart"? I would do it with pretty much any message!
♥♥♥♥ I have a MAC and there is a little icon that has a character viewer and when I click it I get a dropdown window with all sorts of little doodads like the hearts..maybe there is something like that on your system.
Abby, again gently... could you say to your Mom that no, there is no chance of recovery, but would she like him to leave you if it were you inflicted with this disease? Maybe she can "get" that it isn't his fault, and we just don't abandon those we love?
I shared this awhile back....As for the keyboard symbols. I know these....
abby--the aides came from a home health agency. (DH has LTC insurance and it only pays if help is from an agency.) If you do a private hire, you get to write the job description yourself and include what you want done. But it's standard practice for in-home aides to do housecleaning, laundry, cooking, etc. as well as look after the patient. Basically, my aides' attitude was that they'd do ANYTHING to help me out. They'd carry grocery bags in from the car, unload them and put away. One shampooed stains out of the carpet (that had nothing to do with DH), cleaned out the fridge; they were angels. The really good ones wanted to be busy and would suggest jobs to me! I repeat, the attitude you want is that they are there to help you cope and will do anything that contributes to that. The were a few that weren't hard workers and I told the agency owner I didn't want them again.
I would think that in this economy, there is a larger than normal pool of people looking for aide work. Most of us told our LO's that the aides were cleaning people, not there to take care of them. Then, after a relationship was established, they were able to do hands-on care with no problem. It's common for the LO's to say things like "I don't need a babysitter" at first, but the cover story of a cleaning person gets their foot in the door.