Feeling overwhelmed with end-of-life planning.
My wife has Glioblastoma brain cancer and I'm her husband and sole current caregiver.
Having lived in this new town for only 10 months this cancer has hit us without friends, etc.
I've got referred to Palliative Care which is a big help.
What is the best way to determine when an outside care person for companionship, etc. would be needed? We're both 74 years old so personal care help would be needed early.
Thanks for your assistance. My mind is filled with anxiety.
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@boilerbob I see that you are a new member to Connect. Welcome! I know what a tough spot you are in. I went through a couple years of live in care giving for my elderly parents who were both in wheelchairs. The agencies for care giving companions didn't service the rural area, and I ended up directly hiring people to come help. They were hard to find, and most people I evaluated had some negative issues in their background and I found public court records, etc. It is very hard to find trustworthy help, and a lot of caregivers burn out and quit after couple months especially when care gets difficult and a person needs either lifting or bathing help. My dad was at end stage heart failure and the last couple months, he was too weak to get out of bed and I had to get a Hoyer lift. At the time, I was in need of spine surgery, and physical effort was difficult for me. Palliative care did come in to bathe him once a week.
The palliative care or your doctor may be able to help with home health services to come in. Are you a member of a church? You could reach out locally to the pastor and they may be able to visit, even if that is just to help you not feel so alone. It helps to see a friendly face. There are usually lists and resources at senior aging centers that are part of the county where you live. I checked those, but didn't find anything useful. This is difficult to carry the burden alone, and you need help and rest at times. In order to be the best you can be, you also need to take care of yourself. Sometimes, it helps to find what they call respite care which is a temporary stay at a nursing facility to give you a chance to recharge. My parents didn't understand what a burden they placed on me and just expected me to be able to do everything. I didn't have help from siblings because they took the easy road. It was only after my dad passed and I was having spine surgery and could no longer drive or lift anything, that a sibling helped a bit, and my mom complained often asking about when would I be able to come back and take care of her. It was hard, but I know that I did everything a daughter could for her dad.
First let me say it breaks my heart to read your post. Not only is this a ridiculously stressful time for you both, but you also have no support system outside pallative care. Two years ago I had the emotional experience of going through Hospice with my mom and the following year my dad. I am not an expert, but I do know that both the Hospice organizations had Social Workers. They were so helpful in knowing what programs or people to involve and at what time to involve them. For instance, at one point in my mom's care, she was very near the end and my dad, who had a stroke and Alzheimer's dementia pulled me aside, and told me he was going to kill himself that day. He had been talking about "the coward's way out" for many months, but he never said he was going to. Because of the statement he was 'going to kill himself today" the Hospice nurse called the Case Manager and Social Worker and they gathered an intervention team to talk to my dad. Perhaps you can talk to the pallative care nurse, case manager or social worker for some guidance. I know of the anxiety you feel, and I hope you can manage to take care of yourself too. The stress is incredible and support is crucial for you both. The hospice nurses are special people, who are so good at what they do, and your wellbeing is just as important to them as your wife's. Do you know if the company providing care has a social worker? Can you talk to the care giver and let them know your concerns? Are you able to find some time for yourself?
Hi, @boilerbob I'm Scott, about your age, and I was my wife's sole caregiver for the majority of her war with brain cancer. I understand your anxiety. I'd always wished caregiving came with a personalized job description! 🙂 During much of our journey I felt like I was a blind man in a cave, just feeling my way along an having to guess at things most of the time.
I echo @jenniferhunter that finding "quality" care can be a significant challenge, at least it was for us! Most home care, at least in our area, is not regulated and attracts a wide range of people to it — we found many to be looking for opportunities to take advantage of people. I'd say, as a result of our experiences, start early! Maybe a housekeeper who could also provide some companionship or light companion care.
I'm happy to share more of our experiences, successes and failures, and how we did some of our planning.
Wishing you Strength, Courage, & Peace
A help to me and my husband with care for my mom (also my husband's parents .. hit all at same time and my husband had help of his brother and sister) was our local (I live in Georgia USA) Department of Health and Human Resources. It may be under a different name in your community. (Social or Welfare Services.) When my mom had to go to the hospital the social workers at the hospital also made suggestions. With my husband's mom her doctor was also very involved in getting her great care. Sometimes you have to keep asking people to find the best answers for you.
My prayers uplifted for you and your wife.
Maybe see if a few churches around you can offer support? My mom's church ladies were wonderful about coming over and talking with her while I at least had a shower. Just an idea. My hubby passed from cancer 13 years ago when we were 35. I know this road is not fun.
We moved to Bismarck about 10 months ago and do belong to a local church. I check with our paster about women's groups or other groups that can socially visit my wife for a change of pace.
My wife's oncologist gave a referral to Palliative Care at the local hospital's Supportive Care Clinic. We've met with them and they will guide us through the care process including hospice at home.
I've had telephone conversations with North Dakota Health & Human Services personnel and they are coming to our house next week. They will provide Companion and Respite care free of charge.
Thank you for the suggestions.
@boilerbob, I appreciate the update and that you were able to get services in place. As you prepare for your visit, I encourage you to keep pen and paper handy so you can jot down your questions as they pop into your head.
I encourage you to also think of questions you may have about you. Palliative care services are there to support you and your wife. Like @IndianaScott has said elsewhere, palliative care allowed him to be the husband and partner again and not the medical team.
How are you and your wife doing today?