I now realize how easy this disease can get it's two for one.

ghphotog

My immune system is more compromised than I realized and a second round of shingles seems to confirm that. Most of it is my fault as I don't know how to deal with the constant heartbreak and stress for so long other than taking things to the limit. I think I can handle this but in reality I really can't on my own.

I think I should see someone but not my pastor. All he will do is quote scriptures to me and lecture me on why I shouldn't do what I do. They have been my wife's pastor for 40 years and have not once during this entire journey have they offered to visit her or offered to help. I've also worked with them daily very closesly for over 30 years and I know how they are. They look down on weakness and show contempt for those that are struggling for being weak in faith. I shouldn't say that but it's true. They are good people but they breathe their own air.

I don't want to see a worldly therapist, hard for me to articulate why but I aslo don't want to see a christian based therapist that will just quote bible verses to me as well as I don't know anymore how much I still believe or what I believe about God. I still believe I just don't know what to believe. The Bible? I don't know about that anymore right now. I see so many posts on my facebook, not directed toward me but how "God is there and he will see you through, etc, etc. Well he didn't see my wife through this so how can I beleive he will see me through this. She never drank, never smoked, exercised, lived right, was up every morning reading her bible and praying for her family. She didn't deserve this.
Anyway, hard for me to reach out as I feel weak if I do.

Jeanne C.

You're not weak. You have been so strong for your wife. Getting help is smart and will give you support so you can keep going. Your wife is in hospice, right? Why don't you ask her social worker if she can reccomend a therapist for you? Remember that hospice is there for the patient AND the family. My husband's social worker recommended a therapist who is also a clinical social worker with hospice experience. She has been an understanding ear who helps me so much. I find her to be both empathetic and practical. Please take care of yourself. You're important too.

Quilting brings calm

Yes- ask the hospice social worker or your PCP for a referral. Don’t be afraid to be direct about what you need ( and don’t want) in a therapist.

Kat63

I’m so sorry to hear you have shingles for the second time. My husband is mid stage 6 and accepted for Hospice care a month ago. I recently went for my annual physical and my cholesterol levels and my A1C were above where they should be. Before this year my counts have always been good, so know it’s the stress of being a caregiver. I have always put others first, especially my DH and want to be his caregiver. Just what I do. Anyway I know if I want to keep caring for my DH and enjoy my daughters and grandkids, I need to take care of myself and do things for me. I am making sure I eat better and are having home care come more to give me breaks. I do “tapping” to help me relax. Hospice is a help also. I also have a helpful caregiver group. Please take care of yourself. Do little things for you and talk with your Hospice social worker for therapist and any other help she is aware of. Sometime we have to put ourself first, at least I’m trying to learn it’s okay to do this.

ghphotog

I'll talk to them. I know everyone here knows how hard this road is so I know you all understand.

Many people think they might because they had a parent, grandparent that had dementia and though e am sorry for them, they weren't the primary caregiver, let me rephrase that, although they may have sat in now and then, they weren't caregiving 24/7/365 year after year with very little help or support as many of us have and are. Thank you all for your concern, I truly appreciate it and I'll be alright.

harshedbuzz

@ghphotog
I'm so sorry. No one deserves dementia no matter the choices they made in life. Nor does anyone deserve to lose a loved one to this long goodbye. It's no wonder your body is reacting to the stress under which you find yourself.

If your wife is on hospice, please talk to the social worker about finding someone with a background in supporting those impacted by dementia. Or consider asking for pastoral care for yourself with their hospice chaplain. One of my dear friends was assigned a chaplain who was heavy on the fire and brimstone preaching; it was not what she needed in terms of support, so she asked to be assigned someone else. The second one was more someone who could sit and listen and was a tremendous help to the entire family. When her mom passed, she asked this pastor to officiate the funeral service.

And, if you haven't had the 2 doses of Shingrix, you should definitely ask your PCP when you can have the vaccine.

HB

fmb

@ghphotog

Psychology Today maintains a highly searchable database of therapists for just about everything you can think of.

https://www.psychologytoday.com/us/therapists

You can search by location, gender, insurance, specialties, religion, etc. Then in the intake questionnaire you can be more specific about exactly what you are looking for and what your issues are. I was able to find a therapist who meets my rather exacting criteria, and am waiting to hear from her office for an intake interview.

Don't give up on yourself and don't give up on God. It's normal to be angry with God as we grieve. He has broad shoulders and can take it and loves us anyway. Praying you find a therapist who is a good fit for you.

M1

BTW I agree with HB about the Shingrix vaccine, it's quite effective even when you've had outbreaks. They'll probably tell you to wait about three months before taking a dose. The second dose packs a wallop but it's better than getting shingles and risking postherpetic neuralgia, which can be a crippling problem in a lot of people.

????

I am sorry to hear what you are going through.. Have you joined a local ALZ support group. I have found meeting with others going through this is helpful. My wife was diagnosed with ALZ three years ago. One of the things I have learned from this experience is that 60% of Spouse- Caregivers pass away before the ALZ patient. I have a pinched nerve cause by a bad back and need back surgery. I also have some heart issues and am waiting to see a Cardiologist which won't be until Sept. 24th. I was scheduled for back surgery this Friday, last week they wanted an EKG. After they review the EKG they canceled my surgery until after I see the Cardiologist. Seems like everything piles on us at once. I am trying to stay healthy so I can take care of my wife. I eat right, exercise, and have my weight under control, yet I am having health problems. Maybe it is the stress of taking care of an Alzheimer's patient.

ronda b

https://alzconnected.org/discussion/comment/219973#Comment_219973

I did that or used that site. Found a councilor that had hospice and nursing experiences. She had worked with alz. Pt. She does in office and she also will do on line sessions. So I think it would be worth looking into

Please take care of yourself.

Whyzit2

Ghphotog I’m sorry for the pain you are experiencing. If I may be so bold as to offer some thoughts about your spiritual confusion from a pastor who was just as angry at God as you seem to be I share this. The pastor described his wife much as you describe yours. They prayed for healing from cancer but she died anyway. He screamed at God in his pain. Eventually he came to the realization that he was being unrealistic that his DW should be exempt from suffering or anyone else for that matter. The Bible does not say that life is going to be easy nor without pain. We are imperfect people living in an imperfect world. God understands that pain. He went through it when His son died as the perfect sacrifice for the sins of All. Call out to him in your anger and pain and just say Help me over and over. If you don’t quit on your faith journey, God won’t quit on you.

(((Hugs and prayers)))❤️🙏

easy23

My DH got shingles even though he got the two full doses of the Shingrix vaccine.

SDianeL

so sorry you are going through this. I hope you find the right therapist. You could look for a Geriatric Psychiatrist. They are familiar with Alzheimer’s and how it affects caregivers. When my brother was killed by a drunk driver I couldn’t get over it. My cousin a Nurse Practitioner recommended the book “When Bad Things Happen to Good People” it really helped me. I think I would also find a new pastor. Sending hugs. This online group has helped me more than anything else. Also remember the Alzheimer’s Organization has a toll free help line.

sandwichone123

Please keep in mind that a Christian therapist may also have the skills of a licensed therapist, and a licensed therapist may still be a Christian. It's a matter of finding not only the right skill set, but also the right person. It may take meeting with more than one person to find the right one.

Iris L.

Jesus said, In this world you will have tribulation. God will be with us in our tribulation and after. Pray to God directly for spiritual help and for earthly help. That's what I do.

Iris

Nowhere

I was oft angry and frustrated by things (mostly dementia) out of my control. When I hit bottom, I knew it, and couldn’t go on trying to do things my way.I’d tried as hard as I could, he was a good person and I tried hard to be, too. He didn’t deserve the punch that this disease delivers. I was seeking peace for my husband (and myself because if he’s okay, I’m okay) by moving him into a small, quiet, clean, memory care home, and it was ours, the keys and lease literally in our hands, until being snatched away in what I felt was a cruel-industry stigmatizing manner by the director who’d never met my gentle in advanced dementia, husband. I wrote a long stinging, accusatory email to her, railing against her decision, but in the end I didn’t send it and deleted it. Very unlike me to let perceived wrongs go. Then, I asked God to lead the way, that I give up, and I surrender my struggle and ego and trust He was in charge and that wherever we resided, we’d be okay. I could and would see my husband through this disease. And a great peace fell over me. It’s still there. Here’s the miracle which I don’t understand - An even nicer, small, peaceful, and closer facility opened their doors to us within the month, forgoing their two year private pay policy, and accepting his state aid day one.

Let go. Love God- surrendering your will for his (God, Jesus, Abraham, Mohammed, Buddha Truth, Love, Life, Spirit, Soul, Nature, the Universe) whatever you call the one, Great, I AM and accept the peace that passes all understanding.

Wishing you that peace.

michiganpat

I have said many times lately that dementia has 2 victims. Among other things I have an ulcer that won't heal and am grinding my teeth, for which I now have a mouth guard from the dentist. I tried to do it without counseling (over 6 years). I knew my emotions were getting out of control but didn't want to commit to appointments for something that wasn't going to change what was happening. My son finally told me "you need to see someone, for you and for Dad". It took me 3 tries to find someone that was a good fit and who's willing to work around my limited availability. I have been going for a month now, weekly. I really needed that one on one. I feel more in control now and not continually on the edge. Her husband's family has lots of dementia and she is very familiar with the different types. Of interest, many of her suggestions are the very ones I read on this board. It sound like, to me anyways, that your pastor is doing you more harm than good. It may take more than 1 try but finding the right therapist can make all the difference. Good luck and prayers that you find peace.

harshedbuzz

https://alzconnected.org/discussion/comment/220002#Comment_220002

I'm sorry. That is unfortunate. I have a friend who is immunodeficient and doesn't get the usual response to many vaccines. Her infectious disease specialist says that even in a case where she does get the disease, she's had a vaccine for, it is likely to be a milder presentation with few complications. He also recommends scheduling the second shot of the series closer to 2-3 months after the initial one as it seems to work best for most people.

https://www.health.harvard.edu/diseases-and-conditions/answers-to-common-questions-about-shingles

Denise1847

https://alzconnected.org/discussion/70341/i-now-realize-how-easy-this-disease-can-get-its-two-for-one

I feel your pain and distress. I struggle every day with staying strong and trying to adapt with the changes in my DH. What has helped me is listening to YouTube videos of Tim Keller, who is now deceased but was a well-known pastor who has written many books. Look for topics such as "Why does God Allow Suffering? "Peace overcoming anxiety", "What do you do when life hurts?" "Why does God do nothing?' These will help you but you have to keep infusing yourself in these thoughts. I have my sister to vent to, take an antidepressant and struggle daily, but I do feel that God is walking with me through this. Evil exists in this world and will try to invade your thoughts and kill your faith - please don't let that happen.

I think you should consider another church. It is not Godly to preach to someone who is struggling. We are to emulate Jesus, who would have come beside you, embraced you and gently assure you that He has a plan, it is not what you wanted, but He will get you through this if you let Him. "Pray the plan you would have prayed if you knew what God does." - Tim Keller. Jesus suffered ultimate pain and suffering which was unjustified, but He know what suffering is like.

I hope you know feel this helps as I so struggle. I just try to get through the day, praying for the qualities I need to do His will. I have no strength left and I have just surrendered to trust Him - what else do we have?

ghphotog

Thank you so much everyone! Your responses have been very comforting and helpful and have brought tears to my eyes.

As far as my pastor goes, he's a good man. I've known him a long time, 30 years. He's just doing and preaching what he has always been taught. He grew up in the church, his dad, his grandfather and before have all been preachers. I don't mean to throw him under the bus. He just has a different mindset I guess but he's still a good man. It just bothers me sometimes that I would never or have ever gone to him for help or counseling on deep personal issues.

dayn2nite2

Caregiving can injure and kill you. While I was caring for my mother I developed diabetes, and although I am at an ideal weight and watch what I eat very carefully, I still have to take diabetes medication and my morning sugar still runs high.

My mother has been dead since 2012, and in 2023 I was diagnosed with cancer and had to have a hysterectomy. That cancer had probably been brewing for years, and I regard it as a byproduct of the stress and upset of caregiving along with being her advocate afterward. I am lucky I didn't need radiation or chemo and currently I have no evidence of disease, it would not surprise me if it came back. It's not a negative mindset, more of an acceptance of reality, as it often does come back somewhere else in the body.

There are many, many stories here of caregivers developing cancer during or after caregiving and it's not a coincidence.

jsps139_

I prayed for you and your wife at bedtime last night and again as soon as my eyes opened this morning.
My pastor had a huge whiteboard, and he drew a very small dot on the far left side and then a long long straight line from that dot to the end of the whiteboard on the right. (Picture that in your mind). Then he said … “that dot is your life and that line is eternity. Keep that in mind while you go through all the ups and downs in your life, and make your decisions accordingly.” That was many many years ago, but I’ve never forgotten it.

I read this just now … “A deep realization of the next life will be a great help in giving myself totally into God’s care.

In God’s mind everything in my life must have some significance for the next life. Everything here must add to my glory there.

I must take the same long range view of all the events in my life as God does. I must measure each event in the light of eternity and be willing to forego or wait for anything.”

My prayers will continue for you and everyone on this wonderful forum!