My wife of 50 years diagnosed with dementia

Sophietucker

Hello , my name is Neal and I'm reaching out because I'm so emotionally upset and tired . My wife was diagnosed last nov. In the first few months she was doing everything to be pro active .. Mostly what the neurologist suggested. As of now she has a lot of anxiety and is not eating and drinking right. I do have support from our son and daughter and friends. I did join a support group but I'm struggling with my feelings and emotions with how much this hurts her and myself . I pray that I make the right decisions to help her .

upstateAnn

All you feel is very normal. I am three years in, have lots of of support and usually function nation well. Today did not go well, and I just fell apart. Be kind to yourself. You are living with a broken heart.

Sophietucker

https://alzconnected.org/discussion/comment/240188#Comment_240188

Thank u !

annie51

Welcome to the forum. It’s great that you have so much support and are in a support group. We all have those days where our emotions take over - it’s pretty hard NOT to feel that way. There will be good days and bad days for both of you. This forum is my support group and it’s wonderful! When you feel blue and emotionally drained, you can just vent here and get empathy from those who know what you’re going through.

RetiredTeacher

Several years ago I was where you are now. Time and knowledge help you cope. I'm not saying it's easier but eventually acceptance does help us provide for our loved ones. Be good to yourself, continue l8ving your wife and make all the memories you can, while you can. Come here often. Love, support, knowledge, experience, acceptance and never judgement. My friend group was shrinking until I found the kind compassionate people here. It's comforting knowing I'm not alone. I wish you peace and grace on your journey.

BPS

You said you hope you make the right decisions. Sometimes there is no good or right choice. There is only the least bad choice. You have to find a way to be okay with that. Looking back there are many decisions I think I should have made different, but you can only go with the information you have at the time. You can't always be right, but you can always do what you believe is best with the information you have and the situation at the time (sometimes the situation includes frustration and anger, we are all human). don't beat yourself up because of a mistake or bad choice. This is a long road with many detours.

Sophietucker

https://alzconnected.org/discussion/comment/240197#Comment_240197

Thank for your advice ,

Timmyd

Even though I knew something was very wrong with my DW for a couple years, the first few months after medical diagnosis was very rough. I used a prescription for some anti-anxiety / sleep medication and was in counseling. Slowly things settled to a new normal. A few things I have picked up along the way.

Knowing that the behavior was the result of a medical condition resulted in less conflict. There is still conflict, but having a diagnosis of a degenerative neurological disease resulted in less conflict.

There have been good days and bad days. During the bad days, I push through and know that there is a good day in the future. The definition of good day and bad day has changed over time. Despite my circumstances, there are still many things I am grateful for and things that I Iook forward to. This thing has beaten me up but I am not defeated. Knocked down nine times, get up ten.

Good sleep and good health are essential for me. If I am healthy and properly rested, I feel like I can deal with whatever comes my way. If I am sick or sleep deprived, I end up in a dark place. I am very fortunate that I am able to remain healthy and we do not have sleep issues.

Just by having come here and posted your story tells me you are making good decisions. You care enough to use all available resources.

tonyac2

https://alzconnected.org/discussion/comment/240188#Comment_240188

Never looked at it like that, but yes, living with a broken heart. Thanks Ann

SDianeL

welcome to the place for info and support. We understand totally what you are going through. Learn all you can about the disease and caregiving. It will help you help her. Read the book “The 36 Hour Day” which really helped me after my husband’s diagnosis. Also search for Tam Cummings videos online. They are very helpful. Learning will help your decision making. Come here and ask questions. Someone on this forum probably has the answers. I would talk to her doctor about her anxiety and not eating or drinking. They may be able to prescribe medication for anxiety. A Geriatric Psychiatrist is the best doctor to prescribe medications for patients with dementia. Maybe get a referral to one? She’s lucky to have you. 💜

FredW

Hi Neal. Welcome to the forum. This is a great place to learn and to get advice.

Others have already pointed that.

I will emphasize this will be a painful and difficult journey. You’re not only dealing with the demands to take care of your wife, but you also will be dealing with losing her.

If you loved your wife, as I suspect you do, this is going to hurt and you may not be able to deal with that hurt because the demands of caregiving is gonna make you put it on the shelf.

For me, the result of that is that it hits me at the most unexpected time. I’m just sharing this so you can be prepared for that.

Also, I have to take this form in small dosage. There is a lot of sadness and pain here. Because of the nature of this beast, there’s no good stories here. I hurt for everybody on this forum, because we’re all struggling with a very ugly disease.

Use us to get what you need from us. Don’t feel bad about using us. We’re all on the same ugly boat and so many of us wanna help when we have the energy to do so.

My input to you is get lots of sleep, start your education on this disease, and prepare yourself for a rough ride.

I started out getting therapy to deal with the ambiguous loss, getting my legal affairs in order, and lining up my support system. Do this as soon as possible.

One of the best pieces I’ve read on this forum is titled “The Calvary is not coming”. You can probably figure out how to search for that and find it.

Welcome and good luck.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

It sounds as though you neurologist offered you a diagnosis and "prescribed" the usual Best Practices of a healthy diet, exercise, social interaction, staying mentally active and getting rest and sent you on your way. The best practices are great for anyone, IMO, but they don't seem to really make any measurable difference in outcome. Worse, they can become a source of frustration for a caregiver who finds themselves forced into the role of cruise director to a resentful and uncooperative passenger.

It's common for PWD, as they progress to develop something called anosognosia which leaves them unable to recognize the ways in which they are no long capable or independent. Anxiety is common in dementia as those with it lose the executive function and reasoning skills to mentally process the experience. Medications like a low dose SSRI can be really helpful for someone who is anxious but not to the point of agitation.

I highly recommend a geripsych for psychoactive medication management if you can find one. They're the experts in this sub-specialty and have the most experience dialing back negative emotions without sedation.

HB

tfnots

I haven't checked in lately…with spring coming, things seem to be 'better' or at least stable. Making a 'right' decision is sure on my mind…my DH is still able to have some input into our lives and has agreed that we need to move from our home of 30+ years and go to an independent/assisted living environment. We are looking at Sr. communities. I'm thinking we should make the move while he is still able to participate in the decision and I'm hoping it doesn't aggravate the situation with a strange place. Has anyone made a move like this and how has it played out for you? As caregiving becomes more complicated, we live out in the country and in-home help may not be an option. And the reality is..I'm not that young (closing in on 80) and should anything happen to my health, DH would be in a pickle.

midge333

https://alzconnected.org/discussion/comment/240210#Comment_240210

Ambiguous loss. You are losing your loved one but they are still physically present.
The book, "Loving someone who has dementia" by Pauline Boss, helped me understand what I was going through as a caregiver to my wife.