Hello, Well our lives have changed drasticly since last Thursday, my husband was hospitalized for 6 days, severe progression .He went from walking and pacing for 12 to 14 hrs straight, to bedridden now on Hospice. His sister said the most cruelest thing to me,ever I told her that my husband , her brother, doesn't not have a feeding tube, and she told me that I am so cruel that I am killing her brother, he would be straving to death. And that I would have to live with that decision for the rest of my life. I was so upset, I got sick over this, like I don't have enough stress. She has called everyday since Monday and I don't take her calls, I never want to speak to her again. She doesn't know that he does eat, jello, pudding, ice cream, and ensure. He no longer speaks, just mumbles. So how do I get past this??? I have never hated anyone before, but I do HATE her!!!!!!!!!!!!! Thanks for letting me vent. Bless Your Heart!!!!!!!!!!!!!!!
Colleen I am so sorry for what you are going through. Hating your SIL will eat you up alive and sap all your energy. Non caregiving relatives often don't want to know what they aren't seeing. Chalk her up as stupid rather than evil and give yourself some peace. You already have enough heartache to deal with.
Colleen, I agree with bluedaze. When my mother was in her last month of colon cancer, I had one SIL who wanted to take her out of state and have a treatment where they inject their own urine back into them. Another wanted her to eat nothing but grapes for 8 days. Both were cancer cures. A brother wanted to spend $1,200 on a foot pad with radio waves, also a cure. I got more frusturated than angry. Like bluedaze ways, it is stupidity rather than them being mean. Still, it is really hard to deal with.
Hang in there. Focus your small amount of remaining energy on yourself and your husband. Please do not waste any of this energy on being mad at her. There will be plenty of time to handle your feelings with her After.
I'd write a short note to her, outlining his daily nourishment regime...and ask the floor nurse to co-sign it.
If she has questions about him starving, ask her to speak to the nurse and get her suspicions verified or denied.
She could, possibly, be calling you to apologize for her remarks. Ya never know. As Bluedaze said, hatred will make you sick. You'll wake up in the night thinking about it (robbing you of rest). It's NOT a healthy state to be in. You need to focus on your own health and the health of your DH. And please know that people often speak up before they have all the information they need. I don't know why she didn't talk to the nurse about it...she would have assured her that his swallowing reflexes are still intact.
Colleen, People can say the most un-kind things when they realize how horrible early onset Alzheimers is. I have had some horrible things said to me. I think it is because these individuals are so uncomfortable with the idea of someone being so ill. When I have someone say something cruel and insensitive, it hurts very bad. I have to ask God to give me the grace to forgive them, then I can move on. CynthiaC
Many people deal with serious stress by panicking. They say things or do things they wouldn't under ordinary circumstances because they can't cope with the situation. I haven't had Mary in Montana's experiences but I have had a SIL (my DW's sister) who was pushing me to tell my doctors they were wrong and explain to them my wife needed the homeopathic products she sells. I've also had friends walk out of the restaurant because I ordered for my wife when the waitress asked what she wanted. It wasn't that I was taking her rights away. It's just that they couldn't cope their way out of a wet paper bag.
I don't forget that stuff. You are what you do. But I've also learned the hard way that trying to reach them is usually a waste of time. The problem with all this is that many people also have trouble dealing with conflict. It's normal I think to hate conflict; but, it consumes the really nice people.
Of all the things you've had to endure the cruel things your SIL said were the last straw and you have definitely earned the right to vent. She may be calling to apologize but I wouldn't put all my eggs in that basket. Instead I would try and realize that she is under stress too and behaved like a troll.
So here is what I would do. Buy a good quality water pistol. Make sure it's not realistic looking but test it that it really does hold water without dripping a single drop. Carry that around in your purse. If the troll has another shrieking fit, calmly pull the water pistol out and hose her down.
When she screams at you tell her that there are other ways beside a feeding tube to get liquid into a patient and explain 2 decibels above her volume that her brother is getting nutrients better than a feeding tube and that you're acting like a child because she is.
By the way. How fast can you run?
(She's cracking under the pressure. You're not. She didn't even ask how he was being fed. She just panicked and lashed out. Don't let her panic eat you up. Feel the force. Be the water pistol. I am your father Luke. Ok forget that last one.)
I agree with what you said. The water spritz thing is what my mil used to do to her kids when they got out of hand only it was a tall cold glass of water!
It is interesting, isn't it, how people react to our LO who have this disease and by extension to us. They can make outlandish comments like that illy sil did to Colleen, they can tell us we are imagining all of this ( probably to try to make us feel better or like idiots), or they just vanish from our circle...I have experienced all 3 in one way or another.
My sil said if I took my DH off all the meds ( that are keeping him ticking like the Timex watches) and used vitamins and herbs he would be fine and his memory would improve. I have had other know it alls tell me all about the 36 Hour Day book which I have had since 1992 when my mom was dx with this disease..some mean to be helpful and kind but others make steam come out of my ears.
I find that the only way I can avoid just blowing up and telling them off is to just look at them with a serious, slightly frowning, look on my face and say nothing. Just keep looking at them and they'll get the idea of what you're thinking.
As you already know, feeding tubes are for people who are going to get better. They are not for people who are on hospice and dying. They don't keep dementia patients living. They just make them miserable and uncomfortable. Losing weight is just part of the process.
I had a similar situation with my brother when my mother was dying 30 years ago. My sister and I decided not to put our mother on a respirator. My brother who wasn't there when the decision was made was all upset because he knew she was going to die. It is what it is.
You can always hand the know it alls a copy of Hard Choices and then just walk away until they educate themselves.
Do you think loosing weight is part of the Alz. progression, my D/H has lost so much weight that I've had to buy him new clothes, as everything is falling off him ?
And it seems to go in cycles in my DH. One summer he lost a lot of weight; then the next, he started eating and gained it back. Stayed the same for about a year; then lost a little; but now is eating everything in sight, so I know he will gain more weight.
Vickie, you are right. Early on, my hb lost about 10 lbs, which I understand is a common symptom. Later when he went on Seroquel, he gained them back plus 10 more. He has now lost quite a bit (lack of appetite/increased pacing). When my friend's husband was no longer able to pace, he put weight back on. Up and down! Sweatpants and sweatshirts are a good solution to the clothing issue.
My DH lost 18 pounds in just a short amount of time when he went on Aricept. He had already lost quite a bit of weight before that so we stopped the drug. He eats well now but still loses weight.
Mine too but I am not sure if it is due to the Victoza which is not insulin but for complicated cases such as one who has AD is the reason or if the AD or both? He has lost abouat 15 and needed too but he has no appetite to speak of, snacks some, doesn't drink enough water though I press the issue, and maybe food just don't taste good.
He has had a round with very low bp this week and was in hospital for observation and then yesterday he was a little low but looked good and felt good so I just monitored him for the day. He is still asleep at nearly 8:30 and I am going to check on him as he seemed to be in a deep sleep this morning and didn't stir when I got up. I think the roller coaster ride is about to begin with seriousness not seen before due to his health issues overall. It takes me back to the last couple of years with my dad who was shy of 92 by a couple of weeks when he died.
I think I am the only one in the family with a realistic view of what is happening not only with the disease but also with his other health issues. While 2 of the 3 kids seem to have an inkling, the 3rd has the head up in the clouds.