Is there any life left after Alzheimer's caregiving?

Denise1847

I would truly love to hear from those survivors of the Alz. nightmare about whether they were able to recover from the physical and mental strain of caregiving. It sounds like we all are pretty much physically and mentally exhausted.

Ed1937

Hi Denise. Next month will mark 2 years in stage 8. I think I have pretty much recovered from the physical strain, but I'm not sure it's possible to fully recover mentally. Yes, it's easier. But dementia is always on my mind, even though it no longer affects my wife. It still affects many others.

Rocky2

Denise, I noticed that you saw and commented to the similar post "Is there life after this". I am just beginning stage 8 myself. My DW went home to be with her Lord on Mothers day…just a few days ago. Ed and others have been in stage 8 much longer and have more experience to draw on. Although we caregivers will forever be changed by the journey, rest assured that healing and relief do come. The journey is arduous and often long. Know there is a less stressful path, punctuated with both grief and fond memories, in stage 8. Please take the thoughts and encouragement from the comments to the "Is there life after this" post and apply them to yourself. You too are loved and cared for by this community.

Tom

Denise1847

https://alzconnected.org/discussion/comment/209449#Comment_209449

Thank you Ed. I really needed to hear that it is possible to feel "normal" again. May you find peace and joy again.

Denise1847

https://alzconnected.org/discussion/comment/209453#Comment_209453

Dear Tom, I am so sorry for your loss. Thank you for your kind response. You know how it feels in the midst of this storm and sometimes I just needed to hear that maybe one day it will be better. May you find peace, love and joy on your next chapter.

elainechem

I have been an EOAD widow for over four years now. I have recovered a lot since then. My whole life no longer revolves around Alzheimer's. I spend more time with friends and family. Of course, I have a lot of alone time which I never had before.

GothicGremlin

@Denise1847 My sister who had EO Alz and FTD, passed away this last March. By the end of it, I was completely exhausted. Not only was I toast, I was blackened toast.

Physically, I seem to be intact. I had a doctor appointment last week, and my numbers look good, and I was told that I'm "very healthy". So that's good.

Mentally/emotionally? Not as good. I haven't yet recovered, and I think it's going to be awhile before I get there, but I'm hopeful. Alzheimer's is still very much on my mind, and I still relive particular moments and question whether I did something to the best of my ability. I've kept my therapist, although I've lowered the frequency of visits. On the plus side, I've increased my gym workouts to 4 days a week and that gives me a sense of well-being. My goth club makes me incredibly happy; I can be myself and see "my people" out there on the dance floor. The club is one of the few places where I can truly forget (for a few hours, anyway) that Alzheimer's exists.

So yeah, the road to recovery is a bit bumpy, but at least I'm on the road. 🙂 There's hope.

jfkoc

Of course there is life after our loved one dies. But that life will be forever the one changed by the experience we had. Isn't that always true.

I will always miss my husband and his death leaves a permanent hole but my life will be what I make of it. It is up to me to find my way to fulfillment.

That said, is it hard? Of course. Some days harder than others but what is the choice???

Denise1847

https://alzconnected.org/discussion/comment/209853#Comment_209853

Thank you so much. It gives me hope. Stay well and live fully.

Denise1847

Thank you so very much. I pray you find joy, peace and love. I can only imagine that it is like recovering from being in a war where you have lost your loved ones. We are devastated but must move on.

Denise1847

https://alzconnected.org/discussion/comment/209449#Comment_209449

Hi Ed, I am so glad that you are at least on the mend. I am just truly amazed at how the stress and depression affect not just the mind but the body. I am hanging in there but it is so hard.

Denise1847

https://alzconnected.org/discussion/comment/209771#Comment_209771

It is good to hear that one can recover from this dreaded disease.

elainechem

https://alzconnected.org/discussion/comment/209880#Comment_209880

Remember those Alzheimer's Association commercials, "The first survivor of Alzheimer's is out there"? I feel like I am a survivor of Alzheimer's.

Joydean

Denise yes there is life after dementia. But what kind of life. I think jfkoc said it best, it’s what we make of it. My husband passed March 16, he has been with our Heavenly Father for 2 months. I am truly happy he is not suffering anymore. I’m still trying to know what I’m supposed to be doing. I spend time working in my yard and flower beds trying to get them back in order. I walk around talking to my husband. I really don’t want to be around people right now. I see our kids but they don’t live close so that’s okay. I still take one day at a time.

jfkoc

Added;

Doing something that was new to me was really helpful. Everything was new including the people I met.

Arrowhead

My wife is still alive but is now in memory care. Physically, I have recovered. Mentally and emotionally, not so much. The strain of caregiving is now behind me, but the rest is still here. I have spent years trying to prepare for the inevitable, but I doubt it's possible to be totally prepared. I have already begun making plans on things to do and places to go when it's all over. I'm doing what I can now to transform my way of thinking from "we" to "me". "Our" bedroom is now "my" bedroom as I have changed it to fit my "single" lifestyle. I'm hoping that these, and other measures, will help me forge a new life when the time comes.

ghphotog

The never ending strain of caregiving from onset to deep into stage 6 was taking it's toll. I had no choice but to place my DW in MC. Even though caregiving burden has eased there are still many stresses regarding MC, her health, visiting but mostly knowing this draining our life savings very quickly. In another year or so we should be able to get medicaid help when everything is spent down for her care but honestly I'd rather not go that route as it was a nightmare trying to get medicaid help for my mom and I anticipate the same when it's our turn. I'm still tired but now that I don't have my mom to worry about on top of my DW I think I will breathe easier for now.

. . . but I hope my DW doesn't have to take that one-way elevator ride to the bottom of this rabbit hole as she approaches 7 but she's in relatively good health so it's possible. I won't truly know how I'm going to be affected until it's all over. Sometimes I think I'm not going to have much of a life left but quien sabe?

Rick4407

Stage 8 for about 14 months. I kept my DW home with me through the whole journey, I treasure all the time we had together. I was fortunately able to hire outside help to take case of the house so my time was 100% for her. I miss her terribly but I have moved on. Lots of memories and pictures of our adventures keep me smiling. There is a life after Alz, but you have to "go for it" a little at a time.. Rick

Denise1847

https://alzconnected.org/discussion/comment/210018#Comment_210018

I sometimes wonder if I will survive.

Denise1847

One of the cruelest parts of this disease is the length of the suffering for the patient and the caregiver.

Midwest Gal

Yes there is a life after the loss of your loved one, but it has to be re-invented. I am 3 months out but at times it feels like its been much longer. My DH suffered for way over 10 years and gradually left me even though I spent every day with him. I cried so much the first couple months after he died but I'm not sure if that was from the mental and physical exhaustion. My first husband came home from work one day with a headache and died in his sleep without warning. That was total shock that shook me to the core and changed me forever. Plus, I was in my 30s, little money and a little baby and a farm to care for. I'm a bit tougher skinned in my 60s now and my loss is deeper but not that shock as before as we all know the outcome of this disease. When the final days came with my DH I was actually begging God to please take him from all the suffering. I still have the desire to reinvent my life but I have not figured out how to do it just yet. Along with losing my DH who was my best friend and sole mate I also quit all the more active sports that were our lifestyle whether it be riding our horses in the Mountains or jet skiing across a lake. It just doesn't seem as much fun without him by my side. Now I just find myself working to try to keep our home and farm maintained. Over the holiday weekend people were going to parties and such as I sat here trying to figure out where I fit in. I would rather be bored at home alone than with people that I don't particularly enjoy. When my DH was here, we never had to do anything special to enjoy life but be with each other. It seems like most of my true friends live a distance away. I do plan to get out and go visit but I have to shake off this slump first. I had plans to go recently to at least travel up to where my DH is buried and then my old dog that has provided me some company and support started having seizures and has developed a type of dementia….can you believe it??. Now I'm the dog's support person/care taker. My advice at this point is to not give up. Keep searching for something that makes you smile where you can find joy in life again. When people ask how I am doing (which it seems very few people even ask anymore) I just say that I miss him very much but not the suffering.

ThisLife

Midwest Gal: Thank you for sharing your journey 3 months out and the encouragement to keep seeking. My DH and I did not do things together, though. I'm so sorry about your dog. I had a dog with dementia. It's sad and challenging.

I'm six weeks out. No longer in a fog but still dealing with the paperwork of survivor benefits, getting dental insurance, reimbursements from LTC, life insurance, etc. My body feels like it is a hundred years old. I'm tired and unmotivated. Right now, I still want to get off the merry-go-round of life. I don't want to see anyone, talk to anyone or do anything. I'm sure this will pass.

Beachfan

Hi Denise, et al,

Yes, there is life after dementia. I waited to chime in because I feel like a broken record 14 months into stage 8. Life is good here, very good. I just made a reservation for dinner at a lovely restaurant here at the Jersey ‘shore for me and my brother and sister in law. It has been a long, long time since I was able to join them (or anyone) for a meaningful outing. I miss DH every day, all day, with all my heart; we were happily married for 55 years and this is not how I expected to spend my “golden years”, but I have been able to reconnect with family, friends, and most satisfying, grandchildren. If I sound boastful, I apologize. But I am eternally grateful to have reached Stage 8, relatively unscathed, albeit heavy hearted at times.
Everyday I think about all of you on this journey, and hope and pray for your safe and happy deliverance to the other side. It will get better; trust me. Meanwhile, take care of yourselves as well as you can.

Marta

I’m five and a half years into stage 8. In that time I left my home of 40 years and my job of 25 years to move across the country to be with my children and grandchildren. I had a significant other for three years but left him behind, too ( we fizzled out). Prior to that I had a different SO, but he died of glioblastoma a year and a half later. I took care of him in my home until the end..

I am now happily positioned as an NP, working in an adult family home for dementia patients, run by my son and DIL.

I was not ready to make major life changes until about three years into stage 8, and would encourage others to give themselves time. I was no stranger to deep grief and loss; this may have helped me in my recovery.

In all this time I have stayed with these boards, hoping my experience and training can benefit someone else.

Denise1847

https://alzconnected.org/discussion/comment/210863#Comment_210863

Thank you for sharing your story. I hope that time will heal your pain and fade the ugly memories that are a part of this horrible disease. I am trying to hang on. My situation is that we have had an amicable relationship but we long ago grew apart. I feel great compassion for him but do pray for God to take him from his suffering. He is starting with urinary incontinence which he is hiding from me. His presence of mind comes and goes and he has become more dependent, but he is so proud that he won't ask for or accept help. I spend alot of time on damage control and go to bed very tired. I did adopt a puppy mill mama a couple of months ago and she does bring me joy and also alot of work.

Denise1847

Oh to have my life back again seems like a long way from where I am. I am so glad to hear you have made it to a better life.

Denise1847

I can so relate. So very tired and just want to go away and be by myself with no responsibility. On well, maybe one day.

Denise1847

Marta, You have been such a great contributor to all of us. thank you for sticking around to provide your knowledge and experience. You seem to be a warrior and a giver to others. What a blessing you are to those you care for and for our forum.

Marta

Thank you, Denise.

Dunc1129

I just finished four years after the Alzheimer journey/nightmare ended. Life is good now, I have remarried and have a fantastic partner to share my life with, we are enjoying our senior years together. The Alzheimer's experience has made me a better person, I have learned patience, kindness, empathy, service to others and the desire to enjoy life, I try hard to live each day to the fullest and enjoy the small joys and events that life provides. I will never forget the Alzheimer journey and still share my experience with those who seek me out as they start down their Alzheimer road. We are meant to live life and love!

Denise1847

https://alzconnected.org/discussion/comment/211042#Comment_211042

Thank you so much for sharing. Your post truly gives me hope. I am so glad to learn your life is good and that you found joy again. I pray I make it. Stay well and may you continue to find joy.