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My best friend's husband has been diagnosed since November although we all know his condition has been present for quite awhile. She is overwhelmed. I have tried to give her advice because I was through it for 8 years with my mother. Her only response is, "You don't know because it was not your spouse." Of course there is anger in this. It is difficult to watch because she won't even talk to people who have spouses who are in similar situations. Any advice?

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It sounds like your friend is still trying to get used to the fact that her husband has this horrible disease. I know you want to be a good friend to her and maybe in the future she will seek out your advice but for now just listen to her and go easy on the advice. And if she doesn't want to talk with other spouses in the same situation you can't make her. You may think that's what's best for her but she doesn't sound receptive to the idea just yet. Listen to her without comparing her husband to your mother. This is what she's going through right now. Let her go through it.
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It must be so difficult to watch your friend go through this. You, no doubt, have much to offer her, but apparently, she's not ready to accept the advice or information.

As family members of dementia patients, we learn a lot about this cruel condition. I would just stand by her and be there when she reaches out. I wonder if she has any idea how challenging his care will become. She will eventually not be able to avoid accepting help. You say she is already overwhelmed. Does this mean that her husband is getting the care he needs? Are there adult children who can step in and insist that she get proper care if needed? I hope so.
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When the principles are valid the details fall into place. But, the same principles have different result with people in different stages of SD. We are in our 10th year of our struggle with AD. My older sister's husband had AD too. 14 months after his diagnosis,he went to live with his son (my sister's stepson) because of the changes in his personality and verbal abuse that seem to be escalating. My husband's nature and character have stayed kind and caring. My sister doesn't understand why I have kept him at home and devoted myself to his quality of life. I am sure there are times when my sister thinks, " If she would only......" Praying for all of us
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Your friend is right, it is totally different when it is the love of your life and not a parent. Although the disease may be the same the emotions of the caregiver are not. Continue to be her best friend and listen, listen, and listen. Offer help and advise when she asks.Nudge her towards a support group for spouses, but don't try to advise too much. She may feel as if she is losing control over her life, in a way she is, and being advised may sound like being told what to do. She needs to feel in control of her life.
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I respectfully disagree after spending 8 years as a caregiver for my Mum. What I have learned from this experience is to become a better listener.
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I can certainly understand your frustration in wanting to help your friend. That is also my nature, wanting to share the great information that I have about my husband's dementia progression. However, I have learned that we need to figure it out on our own time. As a caregiver, I appreciate everyone's concern, and hope they will be there in the future when it does become overwhelming! Stand by your friend, always be there to listen, and offer advice or information if she asks for it! It's hard for all of us!
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Sounds like she's in a place, where the only thing you can do for her is listen. That's tough for you, who wants and can help her. But apparently she isn't ready for your help. In time, that may change. But she needs to be first and reach out to you for that help.
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It IS different with a spouse rather than a Mother. Listening is the best thing you can do. Stay there as a friend, do not desert her. Just let her know she can "vent" it does help some.
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I would like to address the spouse vs mother comments. All of our journeys are different and all of our experiences are valid. We all know that trying to do it alone wears you out.
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I guess until you walk in someone else's shoes, It IS different maybe for you but not everyone.
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I admit to the frustrations at the beginning. You start caring for a wife or husband learning to cope, sympathy why us and on the job training. As you progress your knowledge increases and you are able to tackle the task on your own pace. The role is not difficult if you adapt a daily routine. The fact is that many are caring 24/7 so be sure you do get some respite. You can study many books on caregiving but your instinct as what is best for the patient will be your guideline. The hard part is toileting and bathing especially lifting if required and depending on whether you are palliative or hospice some outside help can be provided.
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I think we all have different qualities that make the situationeasier or harder. As an RN I find the physical easier since I know lifting. On the other hand I find it hard to let go because I know I do a better job communicating and with diaper rash, etc. After 8 years I am tired and have learned more acceptance of good enough. That's my point. Each of us is different, each of our lived ones is a different person. There are things we have in common and it is great that we try and help those who are new to this.
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She has told you she doesn't need your advice, so stop trying to give it. All you can do is offer unconditional, loving support. And yes, she is correct. EACH person with dementia presents differently, so even though your mother had it, doesn't mean her husband has the same symptoms. Listen to her...
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I see lots of comments concerning caring for a parent vs a spouse. What I don't see is someone who has done both. I am currently caring for my 96 year old Aunt but I never had to do this for either of my parents. Something tells me it would be different if she were my mother but I have no way of knowing. I agree with tired1933...All of our journeys are different and all of our experiences are valid. As a recovering alcoholic of 18 years, I have learned that no one wants to hear my advice about how to travel this path of sobriety. But many want to hear my experience. So, when I am talking to a newcomer, I tell them what I did in a similar situation not what I think they ought to do in theirs. They are more receptive and perhaps a nugget of experience sinks in and becomes helpful as they move down their own path of discovery and growth. Be her friend. Listen. And let her know you are willing to be there for her, sharing your experience and helping when asked. She will love you for that.
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IT IS VERY DIFFERENT! When your spouse has AD you lose your support system. You lose your lover, your best friend, your rock. I have taken care of three elderly relatives with dementia but through all of them I had the love and support of my husband. Now he has it and who can I hug in the middle of the night and be reassured that this too shall pass. No longer do you have a sexual partner, only a man with a child's mind (not conducive to making love), who will advise me on the financial survival of us, who will tell me I am beautiful, strong and sexy. So many things are lost when your spouse has Alzheimer's. I guess if you have only a friendship relationship with your spouse, you would not be losing so much but when your lose your lover, your rock, your most intimate friend. It is far different when it is a spouse than any other person.
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I have found the advice - no, the discussions! on this website helpful in caring for my husband with AD. I think that it matters less WHO the loved one is, and more what the relationship is like. If Mom or hubby is a jerk and always has been, or if this person has been your rock to rely on through the years.

Our daughter, 25, doesn't want to talk to anyone about it because she knows they will say that HE can't change his behavior, so she must change hers, change her expectations, and learn to live with it. I don't blame her for having trouble hearing that as, "Your life sucks, and nothing can be done, so shut up." What she wants, and maybe what your friend wants, is some magic or medical cure to stop the disease. Isn't that what we all wish for?

My advice is to give your friend only the most practical advice, not to make her face how bad things will get, and offer mostly sympathy rather than emotional advice. That sounds like all she can handle, so bite your well-meaning, well-informed tongue and let her find her way. It sucks to watch someone struggle when we think we know how to help.
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My Mother was diagnosed with AD 20 years ago, now my husband was diagnosed a little over 3 years ago. Each person is different no two alike but sometimes many similarities. When it is a husband you have to do everything, and are thrust into thinking what will be left for you to live on when no long term ins. If you are 24/7, the work that consumed his life, no one comes or calls. A loving friend that listens is worth a million.
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Jeanop we all experience a form of isolation and diminished friendly contact. I was my wife's caregiver for over six years and we had a tremendous social life that vanished when she became ill with AD. After she passed and I am alone only one of her friends has been a support but fortunately my volunteer work has provided me with a great group that has been a lifesaver.
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Yes, all of us caregivers must think about the time when we will be left alone. Volunteering is a great way to make new friends and it will help in the grieving process. I hope there is a special place for us in heaven...
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I think maybe you should offer your friend an apology in that you don't understand what she is going thru with her hubby.....then just let her know that whenever she needs a shoulder to cry on, or an ear to listen/vent, you will be there. (and then let it go). she will eventually come to you for listening/venting or maybe even a "little" advise or suggestions. until then, just be there for her.
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Dealing with hallucinations (for example) with a spouse is pretty much the same as dealing with hallucinations with a parent. Many things we face are the same no matter who we are dealing with them with.

For me personally, dealing with my husband's dementia was extremely different emotionally and psychologically than dealing with my mother's. Both are hard. Both are sad. But if the marriage is of the "two shall become one" variety then it is truly part of you that experiences the dementia. Maybe for some people the degree of devastation is exactly the same with a parent or a spouse. That is hard for me to imagine, though.
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There is an old book by Peter McWilliams. He was a poet popular in the 60's or 70's?? Anyway he had a little book called How to survive the loss of a love. This book is really good for almost any loss. It goes through the steps of loss you will recognize and has just a few words on each and a poem for each phase. You may have seen it. It's still in the book stores. Anyway I thought about that book as I read your post. It's light hearted in parts so I mean no disrespect but it's a touch stone of sorts to help you recognize where someone is in their grieving their loss. It occurred to me how we lose our husbands through death or divorce or separations due to life events and all of those are hard and while we live through and recover to varying degrees the slow, slow process of losing a love through a long illness is especially hard. So close and yet so far away. I have a friend who is losing her husband now to pancreatic cancer. He has no cognitive disability. It's so sad. Sometimes it seems it might be less painful ( I can't say easier) to not be aware. Admire her strength. She will find it. It's good to have a friend who is a steady sentry and is there when needed.
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Maybe you can help her in other ways right now. Take them over a dinner, treat them to pizza. Tell her you are going food shopping tomorrow and make you a list and you can pick up what she needs. Maybe she would let you vacuum or dust, fold a load of laundry. I think I was overwhelmed with the care of my mom because I still had so many other things to do around the house and just did not have the time or energy to get every thing else done. I am the type of person that likes to hear anything that worked for others. However, many people need to figure things out on their own. Even a nice bunch of flowers or a thinking of you card may be a nice idea. Good luck, your heart is in the right place.
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