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I am in caregiver mode and it is hard to be in a wifely mode when I am mentally and physically exhausted. I feel like I want to fade into the woodwork every time he calls out looking for me. I can not even go to the bathroom without him hunting me down. Like every 5 minutes he is calling for me to see where I am. If he had his wish, we would just stay in bed all day and hug each other. Needless to say, I am becoming as lethargic as he is.

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Caregiving destroyed my step mom's relationship with my dad & she is a saint! For five years she was his 7x24 caregiver (I went up a few days a month, she had a couple of hours of respite per week - nothing else!). He took everything out on her, raised holy h*ll if she used her 4 hours a week of respite, refused to cooperate with her or let her manage his medicine, insisted she stay in the same room all day with him watching cowboy shows. if he didn't get his way he would shout etc. Where I would say "unacceptable" and walk out for awhile, she had to deal with this 7x24 and would give in usually.

He is in the nursing home now- same behavior. She hates him now. She brings herself to visit and when he starts in on her -she leaves.

Yes - he has been on medication to manage his hostility and anger, but this is how he has been most of his life. Pleasant when his wife knuckles under, raging beast when she doesn't.

My advice to her for years - put him in the nursing home and return to being his wife. Visit, play cards, advocate for him - but get him there before you hate him. She told me she waited 4 years too long.
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It can't help but change.
You go from having one type of intimate relationship with your loved one to having a totally different kind intimate relationship.
What makes this difficult is with some forms of Dementia the person wants more sex, more intimacy and it is difficult to put yourself in that frame of mind when you have just changed the sheets for the second time, changed his or her clothes and then they want sex. And at this point you may not even think of your spouse or SO as someone that you want that kind of intimacy with any longer. The role may have transformed from Wife, Husband or SO to that of a parent and child. How can you be intimate with that in the forefront.
The support group I am in is specific in 2 ways it is a Alzheimer's (OK we will expand that to encompass all Dementia) and more importantly it is a Spouse group. It does help having people that know what it is like to have been married to a person and then the role changes.
Just know that there are many that share the same thoughts and feelings but this is a difficult one to process as well as discuss. No one likes to discuss intimate details about their lives so often this issue gets ignored.
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My caregiving for my hubby when he went through liver cancer, the 9+ months of waiting for a transplant, the 5 months of 24/7 care and the 84 weeks of chemotherapy to slow down the HepC all pretty much ruined our marriage. He was a cranky, angry patient. Rarely noticed what I did and almost never thanked me. I was up 4 times a night, emptying drain tubes, charting temps and blood pressure, so I would nap a little during the day. As he slept through all the above--he figured I'D been asleep also. He told the kids I wasn't taking care of him at all, just sleeping. (sigh)
3 trips a week at 6 am for blood draws, then back (15 miles) to the hospital on the one day he DIDN'T have blood draws for clinic. Fixing meals to accommodate the diabetes....cleaning him, doing all the household things--a kid still at home AND a foster son living here.
He relapsed and the HepC returned, but last year he did Harvoni and he is HCV free and acc to the drs, should live a normal life--whatever that is. He is still plagued by fatigue and sleeps every weekend, from Friday night to Mon morning.
He felt, and still feels, that I was a sub-par caregiver and did next to nothing for him. A lot of this comes from anesthesia amnesia--and he really does NOT remember. But it still hurts me when he tells someone how he basically fended for himself, post transplant.
I thought all this would bring us closer together--we fought this together! But instead, he resents me for being "lazy", for getting depressed during this time and "falling apart"...11 years post transplant and we are like a brother and sister squabbling at each other.
BTW, I had zero respite. Never left him more than to go to the grocery store. And 1 hr of church on Sunday.
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Thank you for all your replies. I'm not alone, and I know it. Prayers go out to all caregivers. It is true that people do not know what we are going through unless they've walked in our shoes.
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Even if you still love your spouse, or what it was that made you love that spouse, when things get really bad, I assure you that given time you will resent and maybe hate that spouse for your sure to come utter destruction. When it starts, WALK AWAY and put them somewhere safe. You owe it to yourself. Don't be a fool.
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bettylu2, I cared for my husband, Coy, with Lewy Body Dementia in our home until his death after 10 years.

1. When you are the caregiver for a spouse with considerable impairments you continue to do the things you used to do in the household, you take on the things your spouse used to do, and added to both of those are all the new tasks of caregiving! Triple whammy. This energy drain is bound to impact all of your relationships, including the one with your spouse.

It helps to hire someone to do some of those tasks in the three categories. A housecleaner. A handyman. A bath aide. Anything you can offload and that frees up some of time and energy is a good thing.

2. You used to have an equal partnership or at least a relationship between two adults. Now you have a dependent. (This is especially true with dementia.) A dependent is not a partner. That is a radical change in the nature of the relationship!

3. If the disease affects behavior then you may not be relating to the same person you married. Perhaps the social filters are gone and he may say rude things he wouldn't have dreamed of saying when he was well. He may be moody or belligerent or repeat himself 27 times in a row. He may get paranoid. He may accuse you of having an affair. He wasn't perfect when he was well (no one is) but, my gosh, you would not willingly marry someone who has all the traits he has now. I can't really think how you could prevent this from having some impact on your relationship.

My mantra for many years was, "This isn't Coy. This is the disease." I certainly did hate the disease!

4. Your sex life is impacted, partly because of the lack of energy and the unattractive behaviors. Your husband may not be able to function in that realm, he may be super-interested in sex, or, worst case, both! I think the biggest deterrent to a healthy sex life is that you are no longer partners. Having sex with a dependent just doesn't seem appropriate and it is hard to overcome that feeling. Sometimes Coy reminded me of my grandpa and sometimes he was like a toddler. Neither of those thoughts stimulates sexual attraction!

5. Money becomes an issue, and worry about the future creeps in. If you've always been poor together maybe this isn't such a big change. But chronic illnesses in the US are EXTREMELY expensive. We are the only "developed" nation that has people go bankrupt over medical expenses. As a caregiver your ability to work may be curtailed. The budget is all outgo and no income. This is not only uncomfortable but highly stressful. Can stress change the relation? Oh, I think so.

Look for and accept any financial assistance you may be eligible for.

6. Fun is often reduced. You don't take as many trips, you don't accept all your invitations, going out to dinner may no longer be pleasant. Buying tickets in advance is iffy, because you can't predict if that date is going to be a "good day." If you are able to travel or go out, it is often more work for the caregiver than staying home would have been. I would say that having less fun together could have a negative impact on a relationship, wouldn't you?

Be creative in coming up with "fun" things you can both enjoy.
~~~~~~~~~~~~~~
My relationship with dear Coy certainly changed over those ten years. I came to hate, hate, hate Lewy Body Dementia, but I never came to hate Coy. I did not have the same relationship as the first 30 years of our marriage, but I had a good one. I think we came to know each other on a deeper, more intimate level. When your partner becomes your dependent a high degree of trust must develop. That is very satisfying.
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I cared for my wife at home for two years and then had heart problems, and so she has been in the nursing home for 10 years now..I visit her twice daily.. I hire ladies to sit with her at the supper hour every single night...She is paralyzed on one side. Cannot speak aside from yes and no..she is severely dizzy 24/7 whenever she is awake..

The first two years at home nearly killed me...the incessant need to be helped onto the bedside commode was the most onerous because I never got a good sleep...

On the plus side, she has always been amazingly (I'd say miraculously) cheerful and optimistic...She is the sweetest person imaginable despite her more-than-massive handicaps..I feel much more self worth than before she was stricken in 2005. Life makes sense..

I agree with some of the commenters who suggest getting him into a nursing home..He won't like it, but he will adapt...

Grace + Peace,

Bob
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I agree with the triple whammy. I am sometimes amazed that every single teeny little thing falls to me--and every big thing. From our finances to putting in a new light bulb--the whole enchilada is mine.

I am blessed that my husband is ambulatory and can eat, toilet, and dress himself. He does not have dementia. He is also the sweetest person on earth!

So, I accept what must be done and do it.

At the same time, I am well aware that a mini-stroke could change this situation entirely. Then, we will do what needs to be done--whatever that is.

Hugs and good luck to all!
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This is an amazing challenge that only those living it can truly understand.
I have been caring for my wife that has a high level sci from an accident at 44. The dynamics of the relationship change regardless of your efforts to prevent it. I totally understand that feeling when your spouse calls out and you cringe and than feel guilty about that!
Intimacy gets replaced with empathy. Your life becomes a testament of "for better or worse" to what others see as a shining light that becomes your darkest cloud. I think the hardest part is feeling alone to deal with the toughest challenge I've ever had. Your partner is now your patient and those future dreams are now memories of the past. You will experience challenges on an emotional level you could never prepare for. The understanding & appreciation you won't get from your spouse or many others will need to come from your own truth. Trust in God for reason and purpose because He already provided the solution.
Philippians 3:14 "I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us"
Mathew 6:34 "So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today."
Philippians 4:13 "I can do all things through Christ who gives me strength"

God Bless,
Dan
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For years my Mom was the sole caregiver for my Dad. She came to hate him. She had no issue telling people she wished he would go away.

She claimed he mumbled deliberately just to be able to yell at her that she didn't pay him any attention. He refused to bath...really smelled. His bed smelled. His clothes smelled. He had explosive diarrhea which he would not seek help for...the messes were intolerable to her. Often happening in public, so she refused to go out with him anywhere. He refused to stop trying to cook..so he had to be watched all the time to keep from having the house burn down. Etc, etc, etc

I learned of this last summer when I arrived because mom had a stroke. I found Dad in worse condition that Mom!

The irony is this. Mom pulls all the exact stuff on me now. However, she is so far gone in dementia that she does not recognize Dad in herself.

I do not hate Mom for all,this stuff. I realize that it isn't her fault. BUT...Mom is a sweet woman, she doesn't do any thing to try to be difficult. I think my Dad did go out of his way to make life miserable for Mom.

My relationship with mom is now reversed. I am the adult and she is the child. It takes some getting used to
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You are absolutely describing my life. My husband was always large (physically and emotionally) and in charge. As a business owner, he was used to making all decisions and handling finances and that carried over into our married life, from finances to intimacy. Through many serious health issues, he was forced to retire on disability at 63 and not at 66, he spends his days in a Geri-chair, incontinent (both ways) watching endless reruns on television. His mind is fine, but he is totally and completely immobile. I am responsible for everything and not equipped to be. Our son decided to quit his job in North Carolina and move up here to help me, but I feel horribly guilty taking him away from his own life to help out the Old Farts. I have ceased to exist. Those low cost cell phone ads with the retired couples make me miserable. My husband needs to be in a nursing home, as many people on this site have suggested to me. But he refuses to go. It would be a financial hardship on us, including most likely putting our home up for sale (houses in our development can be for sale for months and even years) and either rehoming or euthanising our animals. I have decided to seek the help of a behavioral counselor and pray that my insurance will cover it, and that it will help. You may want to try this, too. Good luck, and God bless.
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You just described my life now! I'm so glad you wrote this because I have been struggling with the exact same feelings and issues. It is SO true that others (even our 6 children) do not understand the overall impact being a caregiver to a spouse with dementia has. Caregiving for any circumstance is difficult and exhausting, but it has a whole other dimension when it is your spouse. I know this clearly because I was the caregiver for my mother with vascular dementia and diabetes for over 12 years. However she was in living in a wonderful facility at the time I had to take over as the main caregiver. I could return home to my wonderful marriage and family knowing she was being well cared for.
Now after 43 years of a very strong partnership and loving marriage, it is completely different. (We even taught marriage classes for several years.) As so many others have said here, he is not the same person I married. But he looks and sounds like the same man, so it is a constant re-adjustment mentally and emotionally and it drains me.

Many of the responses here are so helpful and Jeannegibbs outlined it perfectly and clarified much of the reason why I feel the way I do. My question now is "How do I handle all these changes? How do I stay mentally and emotionally healthy through all this? I'm very fortunate that, for the most part, he is loving and kind to me, grateful for things I do ( he has NO idea how much I do.) But he has doesn't realize that he has dementia and thinks he is the same as always so our relationship is the same as always. How do I maintain my equalibrium and his loving spirit when I am constantly "acting" like everything is the same? He tells me constantly how much he loves me, etc. all with the expectation that I will say it back to him. And if I don't, or don't say it quick enough, he tells me what I'm supposed to say! I know I should be grateful that he is still saying loving words, but honestly, every half hour all day long--"you're wonderful, You're brilliant, I love you so much" becomes so hollow and meaningless and just a beacon to the fact of the dementia.

I know my questions of how do I do this are just rhetorical. You just DO IT day by day! I need to go to a support group regularly, but I can't get away easily and I don't have that many logical "lies" to give him as to where I'm going. So this site is very helpful to me. Thank you all for sharing!
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@perseverance64. You may perceive that your posting is helpful, but I don't. In fact it enrages me and makes me feel guilty. So I suggest that. save your platitudes and quotations for your church group or others like yourself. I recognize that others may feel differently, so be it.
I am tired of repeating everything three times before my SO hears me. He reads the paper all morning and watches political commentary of TV. I have come to hate Rachel Maddow's voice with a passion. I came home from work last night @ 11;30 pm and he was watching CNN. My arrival @ 11;30 was a result of stopping at the grocery store because he had no milk for his breakfast.
Our backdoor lock has been broken since two weeks before Xmas and it is still broken. I have been waiting for him to take the initiative to call a locksmith. I have given him two names of reputable locksmiths, one from a mover and one from an architect, both trusted sources. But still no action on his part. So how long will I hold out on calling a locksmith? I supposed I eventually give in.
I am often tired when I come home from work and his lack of work makes me increasingly impatient. Next, I will hire someone to clean the house, as I refuse to be treated as if I am serf.
Thanks for listening and thanks ever so much for posting this question.
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I think about writing. Then what pops up is my rotten spelling and the fear of seeing my reality in black and white or whatever color the message might present in.

We have been married for 53 years. Since the beginning of the marriage my husband began to have medical problems. His mother let me know her son was in good health until she gave him to me. Hummm

Some of his health issues were very serious and some no so awful. He broke his leg one summer and was complaining about the care I was giving him. I packed a small over night bag for him and suggested a change of scenry at his mother's home might help. Sadly for me he was back in one day.

At this point in our lives he has surived bladder cancer, ruptured appendix, broken bones, systemic scaroidosis and now Parkinson's Diease with Ewey Body Dementia.

I cannot push myself to write about all that I've lost as an individual. This final medical blow is really providing a huge hit on me emotionall and physically. I cab;t imagine how awful it is for him since he won't talk about what's happening to him. Scream!! Oh boy does that sound selfish.

I resent having retired. I was self employed in the medical field and found even being away for one day of clinical time just wasn't working, Being gone for 12 hours was just too much. I gave up both of my licenses. My office provided me with a purpose and contact with other persons although they might be not too oriented and more than a bit crazy. I really miss this professional time. I feel reduced to almost a non person just a caretaker. This really does sound like I'm crying in my soup. Stupid way to ruin good soup.

Anyway I know both the disease he has will or can go on for years. A good friend of mine promises me she will tell me when I 'have a life again.' I feel for all of us. Does caretaking change our relationships with our spouses? I can't even quite remember what the relationship use to be like. I think if I remember I will break in a million pieces.

So ladies and gentlemen thank you for reading this pitty pot page and if you printed it out put away your red pencil that you use to correct my spelling.

Cecelia
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It is not easy to be the "care partner" and also a spouse. Over two years ago my wife wanted to move into assisted living and that was REALLY hard for me. Let alone what the kids thought of a married couple for over fifty years not living together. I know exhaustion and being weary. Relationships are now hugging and speaking love and touching. I don't believe there is ever a time when I don't first, before leaving, tell my wife that I love her. Maybe one of the most difficult things for us is that only one of our three children feels that we have done the correct thing by having their Mother move. Having the kids call is a REAL blessing for us both though if a call is to my wife she usually can't remember what was talked about and tell me. NEVER lie to your spouse, is the one of the best bits of advice I can give. I live about one half mile from where my wife lives and since she is now in the "sundowners" phase I see her for shorter periods but do see her usually three times per day. She loves BB, tennis, and Wheel of Furtune on TV so we spend time together and almost 100% of the time we have a short devotional and prayer together before I go home to rest/sleep or whatever. My retirement is certainly different then we both had planned but God is faithful and HE will NOT forget HIS promise to those who love HIM. We claim that for us both.
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"The writing on the proverbial wall" is very evident in this situation. What may happen is that you, the caregiver, will fall ill. Yes, I understand the question is about a marriage. However, nonetheless you can't, nor will be able to "burn the candle at both ends." Look for alternative measures for his care before it's too late!
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I totally understand your exhaustion. I had the same thing happen to me. Then he went on Hospice and instead it getting easier, it became harder for me . He kept slipping to the bottom of the hospital bed. He was very tall with a solid body and I could not move him up alone. By the time they showed up to help me, his bed had no sheet on the bottom as I was using the sheet to pull him up. Then he decided he wanted to go to the bathroom. WAIT You have a cathater. I was so tired, that while I fell asleep on couch next to him, he was able to get out of bed. I had to call 911 for help to get him back in bed. The list of the care was so long. But, I would gladly do it again to have him back with me.
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Hugemom, I understand. I have to stretch my SS ck in order to buy my meds and food. I make too much for any kind of help. And, too little to pay all the bills. He is gone now and it is worse as I also lost his ss check. Mine was higher. I disconnected my cable and have only internet and my Roku. I was in my car the other day and a school bus turned in front me. My car was totaled. It was paid for and no car payment. After the insurance stopped paying for a rental, I was forced to buy a car. I bought the cheapest I could find and now have a car payment. I could not believer I made 70.00 to much to get food stamps. There is NO WAY we could have paid for a nursing home. I too would have had to sell my home. My home is a modular so does not qualify for a reverse mortgage. I am too old to work. I get by, by selling the antiques. Its the best I can do.
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Medap....When he passes, your whole body will ache. You are holding yourself together right now because you love him. We said our Vows and unless kids today, we meant it. In sickness and in health.... After he passes, there are meetings you can go to, through Hospice and some churches. Very few churches however, They are trained as the therapist are at hospice to help you adjust. I pay for a therapist and believe, it really helped.
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A book that really helped me cope with my husband's dementia is by therapist Pauline Boss. I heard her speak at a dementia seminar and then bought her book.

The title is "Loving Someone Who Has Dementia" with this subtitle: "How to Find Hope While Coping with Stress and Grief."

She gets it. She really does.
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