I'm relatively new to this website but have noticed something that makes it nearly unusable for me. Nearly all of the discussions are based on caring for aging parents. I am caring for an aging husband who has Alz and has had a disabling stroke which left one leg nearly useless. He Must now use a walker at all times. I think caring for an aging, disabled spouse is much different than caring for parents. Does anyone have thoughts on this?
I am going into my eighth year caring for my husband, Dave..... It's hard, but,very rewarding. My saying is this.......everyday may not be good, but, there is something good in every day.
Let me know if u have any questions, I will try and answer them.
Take care of yourself to.
Please note that this web site is not for people caring for a parent with dementia. As ShirleyB says, caring for a spouse is very different from caring for a parent.
While the physical care isn't all that different between spouses and adult children caregivers, the emotional part if vastly different. I watched what my mother went through with my dad so I've seen that kind of agony though not experienced it - yet.
Well Spouse is a good site for many and I was glad to read about Alzheimers Spouses (above). I'd look into both of them if I were in your shoes.
This is a heartbreaking way for a marriage to end. My heart goes out to you.
You are dealing with the loss of your spouse on many levels. and it is very hard to adapt to the constantly changing personality. You feel unloved and unwanted and want to run because you feel you are being treated so badly. In some cases if physical abuse is part of the picture it may be best to actually leave for your own safety.
Mental deterioration is not the only thing many have to deal with there is also physical illness which will terminate a life earlier than expected. that is not just an unhappiness but leaves a feeling of being cheated very different from a sudden tragic death because that is so final. But the slow progression makes one feel so helpless like trying to stop a train with your bare hands.
Some things you may have had warning of like for example prostate cancer where surgery will rob you of any hope of a normal sex life in the future and having to deal with urinary incontinence. Now the ability to have an erection can be restored by artificial means. But the lack of desire is more difficult to cope with because the woman feels rejected. When we enter the world of dementia another picture emerges and the spouse may turn into a whole different personality. If they have always been mean, abusive, irrational, paranoid and anything else you like to add it will only become worse. if not this stage will take a lot of adapting to. You need to make sure all the legal paper work is in place and you have absolute control of the finances. Be prepared to take care of everything hubby used to manage and if necesary hire people to do yard work etc.
With dementia changes happen slowly at the begining unless you are dealing with something like a head injury or stroke so early signs are difficult to see and the spouse may deny any impairment and refuse testing.
Shirley I think there are many people here who can help you if you ask more specific questions. Not as many people here care for a spouse as you have observed but any caregiver can understand the stress you are undergoing and will have helpful suggestions for dealing with your problems. So my advice would be to use the sites suggested but to come back here often too. Educate your self on all aspects of dementia and the drugs that may be used especially the side effects. learn enough to decide for yourself if any tests suggested will have a benefit to your husband and if there will be no treatment don't put him through unecessary distress. Our thoughts and prayers are with you and you will find great compassion on this site and really care about you.
Hang in there.
filled with doubt, frustration and confusion - try to get as much support as possible and know that you are not alone. Giving yourself to him as a caregiver shows
incredible love and courage on your part .
1. She has an all electric bed. (thanks to Medicare)
2 Low volume music plays in her bedroom all day.
3. She takes 250 mg/day of Acetyl-L-Carnitine, a brain antioxidant.
4. We set up a walk-in shower. A shower chair with open (toilet type) seat and wheels is used to transport her from bed to shower.
5. Skin itching issues are minimized by moving her around in the bed and keeping the sheets and clothing free of wrinkles. Most skin problems were resolved with Xeroform and/or vaseline.
6. Daily use of Miralax resolved bowel problems.
7 Cranberry tablets and cranberry juice help minimize UTIs.
8. Most importantly I have daily help from family members. They do the things I cannot do because of my own disabilities.
Due to the Long Term Policy we've been paying on for him. They come in two mornings a week for 4 hours each time. Basically, I'm doing this when even Hubby isn't that "bad" so that if and when either one of us gets sick, the caregiver can come in more often. And Hubby & caregiver already know each other.
Family help? Hubby & I have been married 17 years each with separate families. His Son & their family work. However, Son takes him out to lunch every Tuesday. His Daughter is "in and out" visiting friends up north. She helps taking out the trash & sharing with her Dad about their past lives.
We have a Cat who gives us someone else to talk to.
I can leave Hubby alone for a couple of hours because I've set up the phones for automatic dial to my cell.
We also have LifeLine buttons. This is a VERY valuable tool. LifeLine has all the information needed to get help. Since we have separate sleeping rooms, if he needs me, he can push the button. This feature lets me sleep as I'm not thinking if he's fallen during the night. Also, we pay for the LifeLine feature that if he falls, the machine automatically goes off.
I'm very grateful for that feature because I can let him do some outside chores not watching him all the time, giving him freedom to be him. And, with this feature, I don't need to watch him when he showers.
I've never taken care of an older person so I can't compare taking care of a parent vs. taking care of a spouse.
All I know is that God helps me A LOT. Right now, making decisions and putting support hose on him are the hardest things. Except for what he can't remember.
Sorry for the book, but you asked.