Meet fellow Caregivers - Introduce yourself

@fordar, I want to extend my welcome to Mayo Connect. I am happy that you have connected with @IndianaScott. As a caregiver, you will benefit from the support of others who have or are walking in your shoes.

In 2009 I received my liver and kidney transplant at Mayo MN for PSC (Primary Sclerosing Cholangitis). I was diagnosed with PSC nearly 8 years before I had symptoms. I was a patient at the Univ of KY where I was on the liver transplant waiting list. Then, things got complicated and I was transferred to Mayo Rochester. It was the best thing that ever could have happened!

We, PSCers are few in number, but I have located a transplant discussion: Primary Sclerosing Cholangitis (PSC)
https://connect.mayoclinic.org/discussion/psc/

For those long hours in waiting rooms, I suggest that you browse the blogs of newsfeed posts from Mayo Clinic Connect experts.
–Blogs> Primary Sclerosing Cholangitis (PSC)>Newsfeed
https://connect.mayoclinic.org/page/psc/
-Blogs>Transplant>Newsfeed

Please let me know if you have any questions. -Anytime.

Thank you for your kindness. I will be sure to read the blogs and I really appreciate support like this from people who have been through it

My husband of 30 years has been diagnosed with Lung Cancer and COPD, and the onset of Dementia. I am sure this journey will be a difficult one but I just hope and pray that God will help me along this difficult road. I feel blessed to have found this site as I am sure it will be of great help to me, and maybe I can also help others along this path.

Hello @afotoart I'm sorry to read of your husband's health issues. I am pleased to see you found Connect here.

I was my wife's caregiver for 14+ years and can say Connect was a big help to us. I also agree you are right that the caregiving journey can be a challenging one at times. There are several threads here in the Caregivers group offering hints, tips, and explanations. Also, we have a group on caregiving for dementia patients at this link https://connect.mayoclinic.org/group/caregivers-dementia/ It will be wonderful having more input from more caregivers.

How long has your husband been diagnosed? I hope you are doing OK -- it's never easy and rarely simple.

Strength, courage, & Peace

My husband was diagnosed with Lung Cancer more then a year ago and he has had the COPD for a very long time due to chain smoking. The diagnosis of Dementia has been about 1 year now. That is mild compared to the COPD and the Lung Cancer. The COPD causes him to sleep at least 15 hours or more a day. It is very very sad to see him fade away like this. But, maybe it is a blessing, as when he sleeps he has no effects from the Lung Cancer. I just don't know what to do to help him. 20 Years ago I had Non Hodgkins Lymphoma and I lived alone at that time. It was very difficult but here I am, Praise the Lord. Cancer is a very horrible thing to go through for sure. But, I know that God is in control and He will help us both get through this.

"I just don't know what to do to help him." Aah, but you are already doing the very best things possible - you are THERE for him and concerned about his well-being. You have reached out for support so that you will be prepared and have others in the same situation to turn to with your questions.

Please, when you have the time and energy, take a look at these other groups on Connect, https://connect.mayoclinic.org/group/lung-cancer and https://connect.mayoclinic.org/group/lung-conditions where you will find others sharing those journeys.

And above all, please take care of yourself. This is a strenuous journey, and you need to stay as healthy as you can.
Sue

Thank you Sue. Tgis is a very stressful time. Sometimes it is very frustrating not knowing what to do to help him. He sleep so much and it is so very difficult to know what to do. It is also very lonely.

I think loneliness and isolation are sometimes the biggest enemy. During Covid there were many caregiver groups that chose to meet virtually - on Zoom. Is there a caregiver group near you, or affiliated with your church if you belong to one? It might be a place to find others who are sharing your journey.

Another thing to remember is that sometimes, what he needs most is not for you to do something, but just to know you are there and you care. Also, you can be his advocate with his health care team, which he probably doesn't have the energy to do. Do you have any home health care or respite care set up? If not, that is something to seek out to keep you healthy in mind and body as you travel this road.

Also, the door is always open here on Connect. I might not answer right away, because sometimes I'm out in the yard, but there are plenty of caring folks here.

Sue

@afotoart i can only imagine how difficult this time is for you. But you can make it a very constructive time. Find old photo albums of trips, children, good times, and have them available. You can help him relive all the memories! Also, make your house safe to prevent falls. Do you have an Area Agency on Aging in your town? They most probably have lots of information and referrals.

Now, don’t do everything today! Start with making a list of what you’d like to do and just slowly work on it. And DON’T forget to take care of yourself!

You could also enlist some of his friends who could come visit and talk of old times. And there may be dementia support groups in the area. And don’t forget US—were here to help and support you

Thank you for your thoughtfulness. I really appreciate the support. Most of his friends are ill as well with cancer too. Life if really difficult right now, but God will get us through this, as He always does. I pray all of the time for his guidance and support. God is so faithful. I truly believe that things will be ok, his will be done.