Caring for spouse with dementia. Anyone else going through this?

Jeannegibbs is one who has walked in your shoes and you could seek her out or query her and try to connect. If you post under "Questions" vs discussion--you'll get more relevant responses and you can always politely ask for responses from spouses who've even thru this or are going thru this.

I care for u husband, he has had numerous strokes and now has vascular dementia. He doesn't walk anymore and his mental status has been going steadily down. He is only a stand pivot on the best of days. Yes, it is hard,but, I am blessed to be able to care for him at home so far with the help of the VA.

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.

shirley b, yes I am caring for my spouse with alzheimers. It is extremely difficult and heart breaking. I have not yet put him into a daycare. I keep him 24/7. I have very little help. My son helps some but not much. I am fortunate in many ways. He has not reached the level of wandering very much yet and he sleeps most of the night. He usually wakes me once or twice only. I would love to talk to you.

Dealing with a spouse is, indeed, a whole different ball game. You may also want to check out the Well Spouse Association (WSA). Please Note -- it is a paid membership deal, but it's the only place I've found that focuses on spousal caregivers. (I share no commercial interests with WSA or anything else, anywhere.)

Should have been I care for MY husband.....oops.

I am caring for my husband with early onset Alzheimer he turned 60 2 weeks ago it is very hard and very lonly. I am caring for him without any outside help ,no fam and friends. As they all found it to hard. Hang in there. And get yourself lots of hobbies so you can keep your mind busy xxxx

I can't imagine what you are going through. Please know that you have chosen the better part and your husband ,somewhere in his poor mind appreciates what you are doing, and thanks you for it. No one can care for him like you do. I have received much help and support from a website -Bigtreemurphy. This woman cared for her dear husband at home and gives much advice and emotional support. God bless you.

There is a web site just for people caring for a spouse with dementia: thealzheimerspouse. It has information on just about every topic that can come up during caregiving.

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.

I cared for my dad and now I am caring for my husband. The difference is my dad was mentally okay and my husband is physically okay for now. I was working when my dad lived here for 7 yrs. For the first yr I found someone from the church to stay with him. With my husband it is different because I am retired. I take him with me most of the time. He can only be left for short periods. He is at the 2nd to the last severe stage. He feeds himself and goes to the toilet by himself. He needs help with hygiene. My girls are nearby. They both work. I am in a support group. One of them is taking care of her mom. She gets help from her siblings and family. If the parent has money, then the finances are based on their income, i.e., even if you would have to pay full price for daycare for your husband, if your parent has a low income -- daycare may be very inexpensive. I am not looking forward to when he loses his physical abilities. It must be very hard. Try to count your blessing even though it is difficult. Sounds like he is not violent.

You are right,ShirleyB. I write a newspaper column on elder care and do have many spousal caregivers who are loyal readers, so I try to address their needs, too. Yet I also try to send them to websites that are specifically for them since they often tell me in their letters to me that they feel left out of much of the advice.

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.

Carol

am caring for my husband who is 57 and has Lewy Body Dementia. I am 52 and have experience working in this field, plus I helped care for my mom who had vascular dementia and AD. it is vastly different caring for my husband than it was caring for a parent. Plus, I am husband's only caregiver and his care is truly 24/7. It is exhausting and terribly sad.

I am caring for my husband, age 68, with dementia. I have found a wonderful support group, Well Spouse,, here in our area which has been so helpful. I moved to the city where my son lives to have his help, but I knew no one else here. I am trying to establish friendships for support, and have recently arranged for someone to come in 4 hours once a week just so I can get out and have some "me" time. Try to make the best of every day, although I know that is sometimes very difficult. My husband cannot communicate and is not interested in doing anything, so the days get very long. I am going to check out the web sites a couple of the responses suggested because we all need all of the positive input we can get. I am totally relying on God who has been so faithful to get me through each day.

I have been caring for my husband for the past couple of years. He can still take care of his personal needs and do a couple of simple chores. He has begun hallucinating and doesn't always know who I am. Lately he has become aggressive. Hopefully they can find a medicine to calm him down. I take him wherever I go since he can't be left alone. He does sleep through the night which is a blessing. I have 2 sons nearby but they travel a lot for their jobs and have families of their own to care for. Yes, it's a difficult time. I am 77 years old and my spouse is 80. I'm not sure what stage of the disease he is in. Doctors don't seem to have many answers.

I care for my 91 year old husband. He is a gentle soul and it is both my pleasure and privilege to be able to take care of all his needs. He is immobile, incontinent, has a stoma and difficulty with swallowing, so his liquids have tyo be thickened. We are fortunate in having a wonderful occupationaltherapist who has organised a hospital bed and hoists so I can move him from the bedroom to his favourite chair in the living room. His latest delight is a recording of childhood memories his much-loved sister has made (she lives on another continent) which he hears with a wonderful sense of joy every time we play it. I read to him and every night burn lavender oil, which seems to help peaceful sleep. It certainly calms him down when stressed and we hardly ever need diazepam any more. Love makes caring so much easier.

I "care" for my mom 90 with AD long distance and my husband now 68 w/AD. My mom lives with my dad who is 89. His health is failing but his mind is sharp. They have a daily health care aid but no one at night. This is an accident waiting to happen. It is getting more difficult to do check up visits with my husband. He is still independent but his executive thinking is pretty much shot. I agree there are spousal issues that are not addressed here.

I am caring for my husband with alz. He still can feed self, use bathrm by himself. I direct 1 thing at a time. He sleeps a lot & wakes to go to btrm. I sometimes wake him to do things & he goes w me but slow w everything so now have help to stay couple hrs. I have no clue what stage but doesn't really matter I feel. We take it moment at time w God given strength. Just last nite I thought what do I do when he dies if he goes 1st. Will work on that so don't get overwelmed. Have all trusts/wills/dpoa in order already but not the moment of death which each of us will have & someone should written directions including friends/family to be notified. I'm sorry to sound so unloving as I do love my husband of 60 yr marriage. God be w each caregiver. I gain strength through this web. I am not alone.

miface thanks for the supporting answer. Most of those "housekeeping" issues are taken care of but not anxiety, anticipation, anger, being trapped, guilt, frustration and now hate. Spirituality is out of the window for me.

Shirley I think you will find many people are caring for a spouse and although the physical care may be similar the psychological aspects personal adaptations are very different.
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.

I am caring for a spouse with dementia also. Please feel free to share with me.

Since you are new to the site, welcome! However, about half of us are caring for and loving a husband with dementia. Keep reading, you will learn. This disease only gets worse, so know that.

My 63 year old husband is nearing the end of this disease. I have acquired a few helpful skills during this 5 year journey. It has been difficult to say the least. It is heartbreaking to see what the disease has done to them as death approaches. He is 80 lbs or less, a 100 lb weight loss since he started to lose weight. Caregiving will take it's toll on you.

Shirley, I am caring for my husband 74 yrs old, 11 years my senior. I left my job and benefits exactly a year ago to become his full time care giver. I am on the front lines for all the stages of Alz and there are many. My heart goes out to you for the extra complication of the stroke. My husband has chronic debilitating hiccups, our peculiar complication. We are here with what wisdom we can offer. Thanks to the other contributors with websites I wasn't familiar with.

You need the Well Spouse Assn. Visit wellspouse - it's an organization with an online forum and much much more for SPOUSAL caregivers. I have cared for a husband with dementia for over 15 years, and Well Spouse has saved me. Wonderful understanding and friendships there!

I am caring for my 87 year old husband who is in the mid stage of alz. We have been married 34 years. Its heartbreaking but I am thankful for everyday that he can dresss himself and feed himself. Although there are days when he asks me the same question 20 times and I have to pray a lot not to get angry with him. He was diagnosed two years ago. I have finally gotten Medicaid help for him which is a god send, he goes to day care three times a week and I have an aid come in twice a week. I still work, have no outside help and friends have dwindled. It is basically just me and him and he follows me every where. I have no time for himself except when I go and get my hair done, but I am thankful for the little things he can do for himself. Try to take time for yourself, get respite care for him because you cannot do this by yourself. I learned that the hard way.
Hang in there.

Not to hijack this thread,but because it's related - is there anything specifically relating to caring for a sibling, especially if developmentally challenged?

I care for my husband with early stage LBD. It's hard to watch him slide downhill. The hardest so far is losing his driving priviledges because I don't drive anymore either. Stay strong.

I care for a spouse and you are very right, the challenges are very different than caring for a parent. You will most likely be challenged in every way imaginable, physically, financially, emotionally, I wish you well. I have found much help through this group and while the majority of members are caring for an aging parent, I did get a lot of insight from the selfless caregivers here, I do pick and choose questions and articles as a lot of them really don't apply to my situation. So while you may find another group that is more fitting, don't give up on this one, stick with it for awhile I think you will find some very helpful information and support. I wish you well on your journey caring for your husband, I know from experience that it will be a difficult one for you, you have many tough days ahead,
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 .

There are no simple answers, but there may be useful tips. My wife has been bedridden at home for more than 4 years with dementia, and most of the time she knows who I am. Some days are better than others and the occasional smile I get from her is priceless. She cared for me when I had polio 65 years ago and it's my pleasure to help her today. Here are things I’ve found helpful.

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.

Hi ShirleyB I too care for an aging husband not easy. I will come back being called.

My Hubby is 92 and I'm 72. He can still care for toilet issues and shower himself. He is slowly losing his memory. It's where I've gotten to the point I'm not showing him all the Christmas cards that come in or tell him all the little "this and that's" that happen every day because he doesn't remember. AND it takes so long to help him to remember. I know I'm selfish and I'm impatient. I also know I'm probably doing him an injustice by not sharing with him. But, it is sooo exhausting to go over things again and again.

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.