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Caregivers, Cancer, Chronic pain, Eye disorders, Neurology (brain and nervous system), Palliative and end-of-life care

Posts (602)

21 hours ago · Glioblastoma Grade 4 in Brain Tumor

Hello @bjh369 I am sorry to read of your recent diagnosis, but it is good you are here in the Connect community! As @colleenyoung mentioned, I am Scott (IndianaScott) and my wife was diagnosed with glioblastoma and fought her war for over 14 years. She, too, had a resection upon her diagnosis. They were able to remove three tumors. Her neuro-oncology docs were a fabulous support to her and to us as she maneuvered through this challenging disease.

She consistently beat the doctors' estimates on how she would do and showed us that there is still a lot of 'art' in the science when it comes to brain diseases. Plus the field and discoveries are changing at amazing speed! Most of the treatments available now weren't even known when she was diagnosed!

I am sure there are others who can add far more than me to this discussion, but encourage you to ask any questions you might have! This is a great and supportive group!

Strength, courage, and peace!

5 days ago · Loss and Grief: How are you doing? in Just Want to Talk

Hello @tmmmrlts While I am sad to read of your losses, your post rang many bells with me! I lost my wife after her 14 year war with brain cancer. I, too, grow weary of folks, perhaps well meaning, who feel no compunction telling me how I should be grieving. Likewise those who shower me with meandering, often misquoted verse, which do nothing more than make themselves feel better. My personal worst reaction is when someone tells me 'well, she fought a good fight.' Her fight was horrific, not good and no matter what I still miss her more than I can stand some days.

Loss, as death, is unique to each individual! I think the worst of it is folks who have experienced no loss, but have read somewhere of the artificial 'stages of grief' and tell me where I should be grieving at this point in time.

My wife and I were married for 41 years so I have taken to responding to anyone who tells me how I should be handling my grief "Thanks, when she's been gone for 41 years and 1 day, you can offer your advice on how I should be grieving."

I hope you stay strong and have a solid, strong day!

5 days ago · Caring for someone with dementia / Alzheimer's in Caregivers

Hello @daughter1 I am sorry to read of your new caregiving journey and your folks, especially your dad's healthcare troubles, it is great to have you here at Mayo Connect! This caregiving group is a great one and have a wealth of information to share based on their experiences. Plus we all love to share our hints and tips to make the caregiving job a bit more understandable and almost manageable.

My MIL had dimentia and your post rang many bells in my memory regarding that. First, the denial was huge in her family and her husband frequently covered for her until her actions began to spill over into the town they lived in. Other than my wife, all the siblings refused to believe anything was wrong. The worst outcome of this was so much time was lost when communications, questions, decisions, etc. could have been made with some input from their mother, but they missed that. It made things tougher down the line for sure. My wife fought brain cancer for over 14 years and while I was her caregiver she made sure we had the tough conversations necessary, but which made for a much smoother time for our adult children when she passed away than was had by her siblings when her mom died.

I would suggest you try and get some of those hard discussions underway and from experience again I suggest you might want to get HIPPA authorization so you can discuss your father's condition firsthand with his medical team. Again, this was a huge help down the line.

I don't know where you are located, but some of the state chapters of the national Alzheimer's Association have some excellent resources and also (http://www.alz.org) online.

What do you see now as your biggest challenges in your caregiving?

Stength, courage, and peace!

Tue, Jan 8 11:22am · Feeling Stressed in Caregivers

Hello @snowwhitebelle I see you are new to Connect so first I'd like to welcome you and say I am happy to see you found Connect and the Caregivers discussion group. I am Scott and I was the sole caregiver for my wife during her 14+ year war with brain cancer.

I certainly understand how caregiving can make anyone, even the strongest, overwhelmed! I am sure there are many members here who can attest to feeling the same! The role of caregiver is grueling, oftentimes nonstop, and exhausting. Caregivers need to remember that Superman and Wonder Woman only exist in the comics! We can only do so much as humans, no matter how much we love our patient.

My wife depened on me for her care, as does your father with you. She, too, wanted no one other than me to attend to her needs. No one can do the caregiving role 100% of the time all alone no matter who much guilt our patient might heap on us. Guilt in caregiving is very difficult to manage and builds and builds within us. I used as my mantra 'no regrets' while caregiving to combat the feelings of guilt from within me and those directed at me by others.

Once our caregiving role has been established, I believe it is hard to adjust it, but adjust it we must. If for no other reason than as a patient's condition worsens things change all around. When change happened with my wife she often displayed anger at me, the situation, her condition, etc. It didn't make the change any easier, but it was a way for me to explain that I had to do things differently.

I am no pro here, but when I needed to do things different I always began them in very small ways and then built from there. I extended a trip to the grocery store by a few minutes to allow me to sit alone in the car, have a cup of coffee, or perhaps read a page from a book.

Can you get some respite care for your father? Either in the home or at a center?

Strength, courage, and peace!

Mon, Jan 7 7:59am · Meet fellow Caregivers - Introduce yourself in Caregivers

Hello @godlygal I am glad you have found Mayo Connect and this discussion group. I am Scott and I grew up in an alcoholic family so I can relate at least a bit with your dilemma.

My first thought, after reading your post, was you are in an incredibly volatile situation, which beyond anyone's ability to control. The combination of someone who is an alcoholic and taking pain meds is a dangerous one. Dangerous for him, you, and those around him. I, as @colleenyoung suggested, recommend you contact the Domestic Violence Hotline website and provide all the information you have accumulated to his GP, who if they don't know already, need to know of the many issues in play here.

Unfortunately those living in a lifestyle of alcohol/drug abuse cannot act rationally or in what we think of as a 'normal' manner.

I wish you the best and hope you can find the professional, medical help needed in this scary situation.

Sat, Jan 5 7:09am · Caring for someone with dementia / Alzheimer's in Caregivers

One more thought I had @kathymcl and @kdo0827

Please remember one of my favorite lines about caregiving: "Superman and Wonder Woman only exist in the comics." Caregivers are individuals and as such can only do what they, individually can. Once we do our best all we can do is move on to our next caregiving task.

I went so far as to buy the light you see in the photo just to remind me when times got extra tough. Sorry in advance if it's not right side up — I can never figure out why that happens here 🙂

Strength, courage, and peace!

Sat, Jan 5 7:00am · Caring for someone with dementia / Alzheimer's in Caregivers

Good morning @kdo0827 I am sorry to read you are battling depression too. I know I cannot speak for anyone but myself, however I will venture to say many caregivers battle depression too. I know I did and continue to fight it. It is overwhelming, demanding, and isolating. A tough combo to manage — especially when you add the critical demands of a patient.

Not that it helps, but our children and I found some help in the words of my wife's neuro-oncologist. He said that with a compromised brain more often than not the patient exhibits their prior traits in highly exaggerated or magnified forms. I know when he said this we realized the traits we were struggling with from my wife were not 'new', but how she had been times 1,000! At least it was an explanation, which did help us a bit with coping.

There were many days, weeks, and months when I'd have paid a king's ransom to hear a kind word from my wife about my caregiving efforts. Then I'd remind myself she was a mixture of deathly afraid, sick, and uncomfortable, which all led to being crabby. Plus in her case the damage in her brain had destroyed her ability to filter and feel empathy.

It is a tough row to hoe for sure!

Strength, courage, and peace!