What do YOU really think?

Screen Shot 2015-08-19 at 12.24.28 AMHow many drive the car they drive to impress others? Or wear certain clothes to attract attention? Or cut their hair just to entice a mate? Who in this world bases each action or decision on the reaction or perceived reaction from others?

And here I am, under an unimaginable amount of stress, grief and pressure to figure out what to do with Jim and unfortunately worrying about what others will think. Not just strangers, but people who mean the most to me…Frances and Brad. Their current thoughts on the subject and my worry about their thoughts years from now weigh heavily on my mind.

Home care? Institution? Just me and the kids?

I am inclined one way but then I envision having to live with that decision. So I start pulling toward the other solution. Not long after, I think of the original plan. It never, ever ends. Ultimately, my decision really won’t be my decision and I will probably laugh at all of the time and energy I have put into this. The decision will strictly be a financial one not a practical one. And that is really out of my hands.

I find myself justifying so many things with almost each conversation I have.

Earlier this week I chatted with a neighbor. I caught myself justifying. Not long after, I spoke with a casual friend who asked about Jim. Again, I was almost embarrassed as I heard myself repeating the same justifications.

Right now Jim is in a 30 day respite program we have been granted through the Veterans Administration. Wow! What a difference in our home. What a change in me and in the kids. Yet, I have felt the need to justify this welcome reprieve.

But to tell the story of relief is to tell of the burden and the stress and the unhappiness of having Jim at home. Who would ever want to acknowledge that life is better without their loved one with them? Certainly not me and not our kids. But it is what it is. And as I write this, my lungs almost collapse in shock and sadness. What kind of monster am I for feeling this way? How can I be a good wife, a good caregiver, a good person for thinking this, let alone saying it out loud? Me. I am. And I am tired of worrying what others think. Unless you have been taking care of a person with YOUNGER ONSET Alzheimer’s Disease WITH children at home, you are not allowed to pass judgment. You are not allowed to even think that you would do this differently. You really don’t know and could never comprehend what you would do unless you are actually living this very life with the exact same decisions and circumstances. Do I sound angry? I am not. Actually, right this very moment, I am happy. For the first time in a long time, I can breathe and I can focus on being a mom and nothing else (sort of) and it has been so nice. The kids and I have had many relaxing nights, fun days and times of reflective honesty. Yes, before Jim’s disease took hold, our family would have done these things with him and we would have been complete and whole. We are broken and the kids and I need to be able to move on. It is so difficult to try to move on while Jim is still with us. Yet, I don’t really want him to not be with us. Obviously it isn’t my choice whether he is here mentally. It is almost some kind of scientific wonder how he can be “here” physically, but he is no longer “here” mentally. Sometimes he is able to be part of a conversation or have a funny input or something relevant to what we are discussing, but let’s face it, he isn’t capable of being a contributor to decisions and barely can recall what was just discussed. The day to day change one way and then another is amazing if you stop long enough to digest it all. It does not please me to acknowledge these things. He is progressing. We are progressing. Life is hard. Life is complicated.

I often am forced to think back to conversations Jim and I had as he was in the process of getting diagnosed. We had many heart to hearts and he was always very adamant about the kids coming first. I know he had no clue the financial strain this would all have, but he was very clear on what he expected from me: taking care of Frances and Brad.

At this point, I just want to be able to be a Mom. Being a friend, a worker, a neighbor, a wife…all pale. I don’t have it in me to do all of the above as usual. I can only focus on a single point at any given time. Right now it is taking care of Frances and Brad as best I can under these circumstances. Then it is working on care for Jim. Wow. The paperwork and stress is indescribable.

I see Jim. He is happy in the respite. He is getting attention and has activities. He doesn’t have a lot of commotion. He hasn’t asked to come home. He hasn’t said he doesn’t belong there. Bittersweet. I am happy he is happy but his contentedness is a reminder of how far along he has progressed with this disease and it makes me so very sad.

Every time I see someone and tell them about Jim being in respite and trying to decide what is best for him, I find myself trying to justify and explain and to make sure they understand. Really? Why should I care? None of them are going through this. So do I really need to explain myself and what I feel is best for our children? Isn’t it apparent that everything I do is to make sure the kids are ok? Don’t they know that Jim and I had this conversation many moons ago and it is also his wish to put the kids first? Isn’t it obvious?

No, no. I feel the constant need to justify and explain to people who could not possibly comprehend the decisions and the magnitude of those decisions on the future of our family.

Yet, with all of my resolve to be strong and stick to my decisions from so long ago in dark, intimate times with Jim, leaving his care to someone else causes great stress and guilt. How could I ever be without him willingly? What kind of selfish heathen am I? How can I leave him to the trust of others to make sure he is clean and brushes his teeth and puts on clean clothes and stays active? Do they watch to make sure he doesn’t take the tooth brush and tries to clean the sink? Are they making sure he is washing his hair? Do they check to see if he is washing everything correctly?

The torture I feel is immeasurable. There will come a day that I will sit by myself and reflect, gazing at a beautiful scene and wonder how I did all I have done. But in the meantime, I struggle to find a foothold on what the correct choice is.  I struggle because I wonder how it will be for me and the kids or because of what others will think? Or because I will lose everything financially? Do I need a retirement? Do I need savings? Isn’t it better for me to have a stable, happy home for my children? But, isn’t it better for them to participate in the care of their father? Won’t that just grow character for them?  What if he gets violent again? Won’t it be my fault since I knew this was a possibility? Love hurts and love cuts to the very core.

Frances and Brad rock jumping at Belle Isle VA. August 2015

Frances and Brad rock jumping at Belle Isle VA. August 2015

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

18 Responses to “What do YOU really think?”

  1. Dear Karen,
    I lost my mom last year; she died 11 years after being diagnosed with Early Onset Alzheimer’s Disease. She was 66. And she had essentially been completely *gone* from my father, me, and my sister for at least 7 years. My dad cared for her at home probably longer than he should have. It worried me and my sister to see how difficult it became and how stressed out he became, but he wasn’t ready to first, take the step to enroll her in an adult daycare program for people with dementia and memory problems and eventually to a full-time care facility. We tried to gently suggest that he look into homes, or respite care, or some kind of help but he wasn’t ready until he was (if that makes sense.) And he never worried what other people thought. He just felt the need to care for her. which everyone understood but still.. watching him struggle, start drinking earlier in the day, run his blood pressure through the roof.. it was hard to see the shell of my mother with no sign of the woman we knew, but it was extremely painful to see what that loss was doing to my father who was still 100% healthy and present.
    All I can say to you is do NOT worry what other people might think or even say. You are correct – unless they have lived in your home and walked in your shoes, it is NOT anyone’s place to pass judgment. If you are going through what we did, a lot of your friends and even family have probably already disappeared and don’t even bother to check on you anymore. Screw them! You need to do what is best for YOU and your kids! As my dad learned with my mom, she was happy at the day care, she was happy at the ALF, and she was happy at the nursing home where she eventually ended up residing right up to the end, when hospice took over. Indeed it was both painful and kind of a relief that she didn’t seem to miss us or look for us. My dad continued to visit her every morning to feed her breakfast and spend time with her while she was most alert. And he had freedom to go out more, visit friends and family, not worry if Mom was wandering around the house turning on all the faucets, dumping soap on the floor, or just breaking things for no apparent reason. His blood pressure went down and he was able to breathe again. And that was a huge relief for the rest of us. My sister and I are grown with families of our own and we hated seeing the toll caregiving had started to take on our father. Your kids are still at home and they definitely need you! It is going to be hard on them to watch Jim disappear, it is. It is a haunting, heartbreaking kind of pain that I cannot adequately describe and I cannot imagine how hard it would have been if I had been 10-15 years younger when it started. which to me, seems all the more reason for you to talk to your kids during this respite period and see if they also feel relieved, whether it is because Jim is not there or because they can sense that you are not as stressed out when relieved of constant caregiving duties. Together, you and your kids will come up with a plan that works for all of you. You will be ready when you are ready. Nobody else is going to be there for you (sad, but true) so it really does NOT MATTER what anyone else says or thinks. It only matters that you and your family do the best you can and only you can determine what that is.
    You are in my thoughts and prayers and I wish you all the strength, love, and peace you deserve <3
    Sincerely,
    Denise

  2. Connie Howard says:

    Glenn has been in a good facility for 5 months now. It took 5 other facilities before finding this one. I notice I am now more emotional and seem to cry more but that is because I have been able to reconnect with Glenn has his wife and not his caregiver. I am not equipped or personally capable to handle his needs now and he need needs those trained to do so. My tears are now mourning the loss of my husband as I remember all the good times and fun we had and what a great father, provider and protector he was of our family. I have peace and comfort that he is be well cared for. It is important for Jim to be able to have those activities that you can’t provide as soon he won’t be able to do them and will need increased help will his physical care. My daughter and granddaughter come to see him every couple weeks but it is diffilcult. She was always daddy’s little girl. My son hadn’t seen him in 4 months and visited him Father’s Day but hasn’t been back since. I have now communicated to my kids that I am really strugglling losing Glenn and need their support. I feel so alone. Thaknfully this week I had a phone call from each one. Because your children are so young, they need you so much more. I was always told to take are of myself. That has been a challenge but now I am beginning to be a little more easy on myself and i have begun to exercise and eat healthier. Thank you for all your efforts to help End Alzheimer’s but your health must come first so you are there for those precious children, who are Jim’s legacy. Blessings and prayers.

  3. Ena Williams says:

    As an alzheimer’s wife I have learned that what I decide IS the right decision for that moment, and because circumstances change your decisions will also. It’s okay to not be okay with a decision when it’s what’s best for everyone involved. You’ll never know what will work best until you try. You’ll be judged no matter what. Stay encouraged, I am always praying for you, Jim, and your children. As long as Jim is okay utilize this time as constructively as possible. Tomorrow will bring whatever it brings. God Bless.

  4. Lisa Olsen says:

    Once again, your words could be mine and thank you for writing and sharing so your readers don’t feel so all alone. My teens and I are leaving today for a 4- day break without Dad/Ray. We desperately need some time away from Alzheimer’s. Yet I feel guilty leaving and worried something will happen when we’re gone. And what if I go away, come back and he’s worse as a result? But I’m so exhausted, I have to do this for me.

  5. Hello Karen, How my heart aches for you and your children. I so relate to you and your story and have been following your blog for a short time now. I found your blog when my mother’s Alzheimer’s became a real issue to our family. We are naturally inclined to want to hang onto and protect our loved ones no matter the cost to “self” yet we become torn when we have to choose “which” loved ones we will protect.
    Unfortunately, as I recently discovered too many of us are facing that choice daily while we care for a loved one with this horrible disease. I have been through the unimaginable amount of indifference (from those who are supposed to be assisting, those who are just doing a job with no compassion or understanding, and even those who ignore the plea for help because it is too overwhelming).
    I have completed more administration forms and documents than I ever expected to and I was eventually forced to make the decision to have her placed into a home.
    The search for the home was another insurmountable problem, purely because finances were the deciding factor and there was only so much available.
    Yet, I eventually did find a place for mom and she was quite happy to go. This happened on the 27 July 2015. On the day we arrived and unpacked her belongings she was excited and chatting up a storm with everyone she met there but when time came for me to leave she clung to me and begged me not to leave her alone…I had to walk away…probably the worst day in my life…we are not supposed to be forced to walk away from a pleading loved one EVER…
    On my next visit she was quite calm and almost too quiet, so I worried about what was happening in her heart…was she happy, content, miserable, angry at me??? and when time again came for me to leave and I kissed her and said I loved her she answered with I don’t love you”.
    The next visit she was animated and sharing stories (in a way only such a patient can do – randomly and mixed with family history-) of the people she had met and activities she attended and when it was time to leave she greeted me quite contentedly and permitted me to leave without incident.
    Although each of these visits were completely different and ended differently, I have walked away from her feeling like the worst kind of betrayer of one mother’s on the planet. I don’t think it is meant to be easy….
    But, it was still the best decision I was forced to make because life at home has now reverted to normal, not only for me but for my husband and children as well. We are not walking on eggs, waiting for outbursts and aggression to occur at the drop of a pin. Everything has reverted back to the normal predictability of normal home life…Everyone sleeps and eats well and I have stopped being alert for the slightest sound of movement around the house. I now longer have to fight with my children for being boisterous and noisy around the house for fear of her becoming irritated or worse woken up during the night. I am no longer isolated and home bound, while my family go to church or visit friends without me.
    The relief has made a huge difference in our house. I still struggle privately with the sense of having betrayed and abandoned her; but gradually life is taking on a new normal and to date everyone involved is being cared for, loved and protected as needed.
    It’s not going to easy my dear; but as you say someone who hasn’t had to live with the decisions, stress and choices you are presented with has no right to say anything or judge you or your decisions and those of us who do live a similar life to yours with their own loved one to make decisions for would never dare judge you because they are also making hard choices.
    Take care of your children as you and Jim agreed as you walk this walk…
    The only real comfort I can provide is the same thing I cling to daily …”This too shall pass”

  6. Jill says:

    Not sure if I want to bring to the front of this difficult situation but in my gut feel it might help.

    Jim has started a rapid decline and already in respite care. Have you considered hospice/comfort care at the facility where he is? It doesn’t cost anything and at least the ones in Richmond are great. You would not be leaving him there and visiting on weekends. I know he is young, but knowing what I went through with mom I recommend it. My husband helped and our kids were great, even leaning one into nursing school.

    I would at least talk to where he is now. Hospice can last 2 years and in a lot can be extended.

  7. Jen T says:

    No judgment and no justifications needed. You ARE doing what’s right for you, the kids and especially, Jim. Please don’t worry what others think. You can’t control their thoughts or opinions. Screw them. I don’t have a clue what you are going through, but I know enough about you that whatever YOU decide for YOUR family is the right choice, not anyone else’s. Prayers for comfort, peace and strength! Love you!

  8. Diane says:

    I feel your sadness and pain. I remember the first time mom went to respite care I felt so bad. She had to go so we could go on vacation…..what we were thinking of ourself and not mom. She still knew what was going on and she was mad with us for leaving her. It was shortly after we returned that she went to memory care full time. My dad was literally worn out from caring for mom 24/7 with only a break when he WOULD let us help. Up until his passing In June he still wanted to take care of his ‘bride’ but he was not able. Mom needs constant care…..feeding, dressing, diaper changes she is just a shell of our mom. She has hospice care at the facility and it is expensive but so far we have been able to handle it. God bless you as you go through this time. Hugs & prayers.

  9. Louann says:

    You are so brave and I’m so happy for you getting this break. I do not understand your plight as a spouse of an Alz. person but I do as a child who also took care of my Mother for 12 years and finally had to put her in a memory care place after 8 years. I also found myself justifying to others and felt judged at times. Such a gamet of emotions. I wish I could say something profound to encourage you but I dont’ know what that would be. Other than you are so courageous and your heart is so pure I know you will do what is best for you all. I pray you can find a sense of peace throughout your days. I like the quote from Mary Ann Radmacher, “Courage is not the loud Roar but the small still voice that says I will try again tomorrow”!! God Bless you and your children. Be free to enjoy this respite even with all the choices and things that you deal with each day and have ahead. Thank you for your honesty in which you write. I can certainly resonate with that!

  10. Jen Shern says:

    That picture says Leap of Faith…..it’s between YOU and GOD…no one else.

  11. Karen, no one understands the pain and grief of losing ones spouse to Alzheimer’s This is worse than losing a parent. Your life and my life will never be the same without our husband. Love hurts. To leave you with a quote from C. S. Lewis:…”the pain now is the happiness and love I had then; that’s the deal.”

  12. From experience having lost Joe six months ago, I will never be happy as I once was. I am just living waiting for the day to feel alive again. I don’t see that happening.

  13. Andrea says:

    Pray for God’s wisdom and assurance with the choices you make. You will be much more confident about your decisions and can reassure others when you reveal to them that your choices were made prayfully

  14. molly waugh says:

    I can’t thank you enough for writing this blog and writing this post. My mom was diagnosed with alzheimer’s in 2010 right before her 57th birthday and 1 year after I graduated college. On Monday we are moving her into a memory care facility, as it is no longer safe for her to be in the house despite almost 24-hour care. I constantly feel that I have to explain to people WHY we are having to move her into a care center as if they’re looking at me like we’re bad people for doing this. My dad always said he wanted to keep my mom at home for as long as possible (or forever if possible) and it’s just no longer a possibility. It’s breaking my heart to know that my mom will never live at home anymore but I know it’s the right choice and I know you will make the right choice as well. Thinking of you and your family and thank you so much for all that you do!

  15. Lee Ann says:

    I’m so glad for you that you have this respite care for a month. Its good for you and the kids. I think a respite time really helps everyone relax because its so needed.

    Nobody should feel guilty about long term care. That’s what we do. As people become incontinent, they start having skin breakdown and problems with edema and decubitis’. Long term care is there with that knowledge. And while I have seen bad places, the great majority of facilities are great, and all the CNAs could make as much money at Taco Bell, but they like caring for the elderly and people with dementia. Of course, fortunately (or unfortunately) they usually go back to school to be nurses. But a good CNA is worth gold.

    Moving your loved one into a facility does not ever mean you are abandoning them, kicking them out, giving them up. It means you know the best care for Jim is with people who know how to care for him. Then you can visit and be relaxed and be a wife. You don’t need to be a nurse, your job is wife. My job was caring for the patient.

    And justifying your decisions. Remember the old saying, “those that matter don’t mind. And those that mind, just don’t matter.” You do what’s best for you and your family. I think of you all often.

  16. Ann says:

    Karen, I have such a great deal of respect for your honesty. Imagine how many caregivers will read these words you write and say, “maybe I’m normal; she thinks the same things I’ve thought…” What a gift for anyone feeling alone and as though no one has ever felt the pain and confusion they’re feeling.

    You’re right – it’s no one else’s business how you cope or why you make the decisions you do, but like you, I worried. My mom has been gone for almost three years and there are still times I find myself justifying why I moved her into care (because I’m a one-income household and had to pay my bills – pretty straightforward), why I allowed her to be moved to the hospice facility for the last nine days of her life, why this, and why that. I guess it’s human nature, but to the extent possible, remind yourself that the opinions formed by outsiders are completely irrelevant. No one walks in your shoes; therefore, no one has the right to judge.

    I do think, too, that any reasonable person seeing your situation, knows that you’re doing your absolute best in a unfair, crappy as hell situation. I’m glad you and Jim had those important conversations, and you can take comfort in knowing how he felt about priorities when it comes to the kids. And he’s content and happy where he is, so it’s okay for you to stop and take a few deep breaths – he would want that for you. I’d say you’ve more than earned it.

    Sending love & prayers…

  17. Char says:

    A man in a support group for just spouses had to make that choice. His son had two more years before college. His mom’s illness was significantly having an affect on him. It was the best choice for them all to place her. Like you, he noticed a big difference in his son after she was placed and the stress at home was greatly reduced. It was the best choice for them all because his wife was also more relaxed where she was.

    For me, I have missed watching my grandkids growing up because he could not handle the noise. The oldest are 13 and 15 – I have missed the last 5+ years of their lives. They live with their father and his family who do not encourage them to keep in contact with their mom’s family. Only by actively being there were we able to be a part of their life which is gone now. My younger ones i don’t see often either because he can’t handle their noise and energy. When we go to visit, he just sits there – basically what he did in his better days too.

    Tough decision, but you said Jim wanted you to keep in mind the kids well being. He is dying – they are just starting their lives; remember that. Even if placed, you will still be very active being his advocate, to make sure he is getting good care.

  18. Every one of our team members participated in the Alzheimer’s Friendly Business training. We now feel more confident in our ability to support family caregivers and provide a comfortable environment for people with Alzheimer’s and their families to shop.

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