Just venting, I guess

Cecil Jones

It's been almost 9 years since we first noticed Jenny having trouble with forgetfulness. I don't guess it really matters when, "they" say to exercise the body and mind? If any of you knew or know her, you know she definitely did both.

The first few years no one really noticed, maybe we didn't want to see, but it was there. The last few years has almost broken me. I question myself and even God Almighty. I ask why and I get no answers. My tears fall on rocks and run off. But! I trust God! I may never understand, but I believe that God is Just! He is with me! Why, I truly don't know.

Today is January the 28th, Jenny can barely walk, every step she looks like she's gonna fall. I hold her hand and guide her, take her to the restroom before I lay her down to sleep. She stayed up until 8:00pm tonight, that's a lot later than normal. Sleeping usually around 15 hours a night. Tonight as I put her in bed she couldn't help me move her from the edge. I basically had to lift her on my own hoping I moved her enough so she won't fall out.

All these years and it seems her life is coming to a close? I can speak of this sometimes and sometimes I can't, sometimes I just cry in silence. Caregiving is the loneliest job I've ever had. It seems I've been abandoned, to be honest, I don't know how I go on. Is it because I'm this great person and God gives me strength? NO! I'm not. But He does sustain me. I'm not sure why.

Tomorrow, I'm not sure if Jenny will be able to walk, I don't know if she'll know who I am. We've been married "somehow" for 51 years, what will I do when she is no more? Sometimes I pray for God to take us both, I mean what have I got to offer? To be honest, this world kinda sickens me and I look forward to a new beginning. Who knows?

I have a sitter (Blenda) that comes Monday thru Thursday from 8 to 4. She's been coming since August and has really gave me a break. Sometimes I feel guilty about leaving Jenny with her and knowing or thinking it won't be long before she's not here. I think, what am I going to do when she's gone? Will I travel, will I stay in Buhl (Alabama), will I sell all and move, Or maybe become a hermit? I do know I'll be walking a unfamiliar road.

It helps to write some of this down. I know I have it so much easier than some that I've read about with dementia. Jenny is very easy compared to them. The Neuropsychologist diagnosed her with "Text Book Alzheimer's", it seems the other dementias are worse? I know the end result of any, are the same.

Sorry for the vent but it helps sometimes. May God help us all.

Sent from AOL on Android

BethL

I'm sorry, Cecil. This disease is so cruel. We don't understand, all I know is that Jesus said that in this world we will have trouble, but take heart, for I have overcome the world. from John 16:33 Lean on your faith and post here as often as you need to. We care and will support you. Hugs

marier

I am right there in the trenches with you and rely on my faith to see me through each day sometimes each moment. I am 10 years into this journey and I am not sure what the future will hold for me once it is over. I try to stay focus in the present. It is difficult at best. I do believe and have faith that I will find my way after DH leaves me. Vent away on this forum. Sending you more hugs.

fmb

@Cecil Jones

My faith is what is keeping me going since my DH died on Jan. 21. God's providence and the loving people he surrounds me with are keeping me alive. Caregiving is the loneliest job, even if your loved one is in a facility. All of the responsibility and decisions fall on the caregiver, even if the hard physical work is performed by someone else. Now that I am in Stage 8, I, too, am asking myself questions about the future. As a widowed friend of mine puts it, "Who do I want to be when I grow up?" All I can do is remember that God does have plans for me (Jer 29:11) and that they will be revealed in his own time. ((hugs))

Scooterr

Cecil, I totally understand ,what your going through, just like many of us. The days are lonely and long and I pray that God would end the suffering of seeing my DW decline. Then I think, "what would I do without my Sue." Your right God sustains us to carry on everyday, even though I have question why such pain we have to go through day in and day out. My DW and I have been married 43yrs. and we're 6yrs deep in this horrible disease.

I get up every morning with my Sue say our prayers and give our worries to God and like we say here in OK "Cowboy Up." I just thank God I still have time with her and try my best to move forward.

There's a verse in the Bible, I can't remember where, it says, "don't worry about tomorrow for tomorrow will have it's worries." Cecil one day at a time, take on today then put it behind you. Even though problems will come don't backdown from them, stay strong and run your race that's before you. The reward is when the job is completed. Thank you for your post I needed to vent a little myself. Have a good day Cecil.

Whyzit2

Cecil, you have received good advice and encouragement here. I once heard a pastor say why me God when his dear wife passed. The answer came to him…,why not you? None of us are so special that disease won’t affect us. We live in a fallen world. My DH and I have been married 60 years and we are at 15 years since the diagnosis of mci..,and now stage 6 Alzheimer’s. It is easy to get down and sad to be lonely as we all know. I read a devotional yesterday that really struck me. God wants us to live in joyful dependence on Him. Somehow that makes sense. I am so glad for my faith in Him. Otherwise I would be a bigger mess than I am. You are not alone. God’s richest blessings for you and Jenny.

cavenson

Cecil, your post touched me and, I'm sure, many others. It's not that misery loves company, but posts such as yours remind us that we do have company on this sad and lengthy journey. We have either experienced much of what you have experienced, or will probably experience it in the future. The Alzheimer's journey is not predictable; so, as others have learned, we have to take it one day at a time. We can get strength through seeing how others have survived it, and faith helps. "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." (John 14:27) You're right that it helps to write down your experiences. I keep a journal. And, never feel guilty about your respite time; you need that to face tomorrow. I wish everyone strength and grace today.

Jeanne C.

Caregiving is a lonely and thankless job. I’m glad you have your faith to sustain you. Honestly, mine is all but gone. You have done so much for your Jenny. May I gently suggest you bring in hospice for an evaluation if you haven’t yet? My husband has been on hospice for almost a year now. He keeps declining so they keep recertifying him. Hospice services include a weekly nurse visit, a social worker, a chaplain, CNA visits to help with care (I call ours “the shower whisperer” because she’s so good at getting him cleaned up), and, in our case a music therapist who comes to sing with him. They handle meds, diapers and supplies, and just make your life a little easier. Please consider taking a little help because you’re important too.

Cecil Jones

https://alzconnected.org/discussion/comment/235408#Comment_235408

Thank you for your reply. I, like you have had Hospice for a year. They are very helpful.

cdgbdr

Cecil, may God bless you. I am not as far along in the journey as you are. Jenny is lucky to have you

BPS

You said you don't know what you will do when she is no longer here. That is something I have wondered many times. We have been married almost 50 years but our relationship is not what it once was. It has been a long time since I have felt really close to someone that I can talk to about my deep feelings. I don't want to stay in the house I am in because right now it is full of memories that are not great. maybe later I will remember good times. I hope when the time comes that I will not have lost any desire to do anything.

SDianeL

Cecil, praying for your strength. We here understand exactly how you feel. My husband Lonny passed in August. We were married almost 39 years. I’m struggling with how to go on without him. Thank God for the wonderful life we had and I cherish the memories. Jenny is lucky to have you. One day at a time. Hugs.

Russinator

((HUGS))

howhale

Can relate to all of what Cecil Jones wrote. We have been married going on 57 years. My loving wife was diagnosed with MCI about 8 years ago at age 67. She is now in stage 5-6. I care for her at home with the help of caregivers for 5 hours a day. It helps but I don't recover during those breaks. I just survive for another day. I understand why everyone says "you have to take care of yourself". It is meant with the best intent. But, frankly, the only reason to care for myself is to enable me to care for her. When that task has ended, I could care less what happens to me. Without her, even in this worst state, there is nothing left. Sure, the family tells me how important I am to all of them and I know they love me and mean what they say, but, what is life without her. For two thirds of my entire life we have done it all together. Life now is a rotation of cursing (this miserable disease) and crying (hidden so as not to upset her). Recovering life, after being a prisoner of this disease for so long (and my trip is still underway), right now is unimaginable. There are those times when I wish for the best outcome to be that we leave together.

Vitruvius

My DW is 73 and we have been married over 50 years. She is now near the very end, Stage 7f and I had to place her in MCF. I have not seen her with her eyes open in months. During the entire time I visit she does not move a muscle except to move her mouth and take food when you tap her lip with a spoon. Except for her feeding reflex she seems to have completely slipped away. Yet she is still here and I still visit and feed her.

There is little left of her life and I feel the same about mine. Like so many here, our plan was to work hard, retire and enjoy growing old together. When my mind wanders to reminiscing about our various good times, I have to stop, it's too painful to think about what our life was when it held the promise of a long life together. I have no plans for the future, there is no 2.0 version of me. I hold only the though of wallowing in grief for the rest of my days. I will always love her.

Russinator

((HUGS))

zarzycpp

This disease is terrible. All I can offer is prayers for you. My DW has just been diagnosed - and I'm already lost.

sonrise

Hello, I'm new to this group and Just looking for support I guess. My husband has been recently diagnosed with what the doctors are calling "Alzheimer's-Like" dementia. He's due to have NeuroPsych testing in late May. So maybe we'll have more answers after that about his condition. He's been having memory difficulties for 2-3-4 years, and we finally got the doctors to do a brain MRI, which shows shrinkage in 3 areas of his brain that are significantly more pronounced than should be for his age (he's 75). He also has Parkinson's Disease, which was diagnosed about 4 years ago, although he's had symptoms of that for probably 7 years, we just didn't know what it was. He is a Vietnam Vet with Agent Orange poisoning… hence the Parkinson's. But thank the Lord that the Parkinson's seems to be developing rather slowly. But all of this is such a struggle for us both. With being told about his Alz-Like dementia a couple months ago, we've gone into a real tailspin. We both feel like we've been blindsided. Were trying to wrap our minds around what this all means. I guess the good part is that we already live in an Independent living community that is attached to a continuum of care facility which has good assisted living, nursing, and memory care facilities. So as needed we can move into the kind of care that my husband needs. We had planned this because I'm 10 years younger than my husband, and he wanted someplace that is great at taking care of elderly (ie: me) after he is gone. We didn't know that we'd need this kind of facility so that he can get the care that he needs as a memory care patient. And we didn't know this was going to be such a struggle as it's become, and will become more of a struggle as time progresses. I've thought that aging has it's own struggles, but add in Alz-Like dementia and Parkinson's and whew… we're just blown away. I guess I just needed to vent here and tell my story to someone. Thanks all for listening.