I'm New Here and Caring for my spouse (husband)
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Dear @Genesis62 , I posted a similar comment a few months ago. I’m sorry you’re in this predicament. You’re not alone! My thoughts and feelings were initially very angry and conflicted but have changed drastically as I’ve processed my new role in life. I would like to do many things for myself, but for now I’m just doing housework and caregiving. I’ve been in the process of “breaking up” with my husband, so to speak, for the last few months, after 34 years together. He’s not who he was and I can’t feel about him the way I used to. I try to make him happy but also have to cut off to ensure my sanity and some peace and comfort for myself. I have my own bedroom now. He is not capable of anything emotionally or cognitively that would qualify him as a partner so I’ve allowed myself to let that go. I take care of him as an old best friend, family member, and father to my children.
I receive financial help from our oldest son and I work one day per week plus we have my husband’s SS. I don’t want to drain my son forever. I had to give up my career, pension, health insurance, and salary. I am taking it one year at a time. I’ve been a full time caregiver for 14 months. After Christmas we’ll have a family meeting (me & the 3 kids) to see where we see ourselves in a year.
Sending you love & best wishes. I have deepened my relationship with God through this journey, which has been an incredible blessing. This forum and the folks here have been very kind and helpful. Keep posting & reaching out! It helps.
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My husband's primary progressive aphasia has taken away almost all his ability to speak, and has muddled his thinking in many ways. I am with him almost 24/7. I get frustrated also, but my ability to practice patience is getting better. He hovers right behind me, often, including while I am cooking. He moves the boxes and stuff as I'm trying to sort and tidy. He puts food in his pockets and leaves crumbs and apple cores around the house, unless I catch him first. He wears his hiking boots in the house and scratches the floors. (unless I hide them.) He left the house a couple times before I realized that my showing irritation made him leave the house & get lost. That was scary. So I smile more; I must. It helps us both relax.
I try to think once a day about things I did well. For example today, I searched and finally found his razor (in the t-shirt drawer), I helped him wash his hands 4 times and shower, (handing him the soap & towel, & turning the water on and off,). I congratulated him on sorting the silverware, and folding the clean laundry. I have started reading /looking at books with pictures with him before he goes to sleep. He is sleeping well now; we took a good walk this afternoon.
I don't think about the things I did before. My life has become a microcosm of a crazy world. My work, which was useful, is being done by others. I am lucky that I have someone who appreciates my hugs.
Genesis62, I hope you can find some periods of peace in your new venture in life.
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Dear Genesis 62, I'm sorry you need to be here but since you do, this is a good place to be. Everyone on the forum is very helpful and caring and we all know what it's like to be a full-time caregiver. One of the first things you need to do is to see a CELA, (certified elderlaw attorney.) This person will be able to guide and help you make necessary financial decisions and also get your DPOA (Durable Power Of Attorney) set up. It's important to do this right away while your DH is still capable of signing. Another thing that might help is to obtain a copy of the book, "The 36 Hour Day." Many people have found this helpful. It is important to remember not to argue, correct, or try to reason with your LO with dementia as they have lost their ability to reason. Another thing to consider is to contact your local Area Agency on Aging. They have been extremely helpful to me. Through them I receive 26 hours of respite care a month and 2 hours of personal care. This enables me to get out of the house to run errands or to meet a friend for lunch or just go for a walk. Ask family and friends for help also.
Caregiving is hard and it is important that you take care of yourself, too. Rest when you can and don't neglect your own health. I know this is hard and you are frustrated and probably scared. We're here to help. Please ask all the questions you need to ask and read a lot of posts. My heart and prayers are with you. Sending virtual hugs.
Brenda
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I to work very little now. I used to take my DW to work and she would nod off in my office but now she gets too ansy and starts acting out at my workplace so no more of that most likely.
We live on SS and a small pension. We have no debt but one car but it still takes most everything we make to pay the bills.
I'm sure I don't need to say but be sure to get your house in order sort of speak. Get Durable POAs as well as Medical POAs while you can. Look into city programs such as Human Services if they have that or something similar to that. They will do a financial assesment to see if you qualify for services such as daycare or other respite services. The city provides me three days a week of day care and that helps.
Speak with a Eldercare Attorney if you can to help get all of these ducks in a row and to help you qualify for Medciaid assitance when the tiime comes to possibly place your DH in memory care.
It's a long hard road but you'll make it. Hang in there.
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@Genesis62 Hi-we’re here with you 😔 Honestly, i don’t like (actually hate) this role we have. I used to reference things in my mind as unbearable “losses”,,,his life, my life, a future, our relationship, freedom to live and experience new things, time to pursue interests,….all losses. I’m now trying to tell myself that all those things weren’t actually mine to keep. At least not for now. That reframing brought about some acceptance,,,though all the while bucking and screaming.
Hang in there, take in some of the good advice posted by others, and vent anytime you need to. Blessedly, this is temporary, as is everything.
PS multiple times a day,,, i am beyond over this role. Including 1am this morning as i was washing the living room floor of pee. Peeing around house has been going on for almost 2 years with increasing frequency. When will something happen that makes me throw in the towel? I don’t know but it wasn’t this morning yet.
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Dear Genesis,
I am so sorry. This is a very difficult journey, but you have found some friends here to support you. Others have advised you're getting a certified elder attorney. This is critical as you may become eligible for medical assistance and other financial supports. If your DH is a vet, reach out to Veteran's Health as they do assist with lots of supports.
I pray every morning for the people on this site and their spouses. I truly wouldn't be able to make it through this without my relationship with Jesus. One day recently, I just was having a really bad day of coping. I had a very clear repeating thought "keep your eyes on me." I have no doubt that Jesus was telling me this to help me through. Now, when I have difficulty coping, I remember to keep my eyes on God, just like Peter did when he walk out to Jesus on the sea. When he had doubts, he would start to sink. Maybe this will help you. God bless you and your DH and may He keep you in His care.
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Thank you so much for your knowledge and support. I will definitely contact a CELA.
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Thank you DTSbuddy. I see a lot of similarities in my days as in yours. My husband stays on my heals especially when he is with me at the store I can barely move and he likes to take food into the bedroom and to bed, so I have to try and keep an eye on him constantly. I have cameras in the kitchen and living room just to keep an eye out.
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Thank you!
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Thank you for your support.
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I think so many of us can relate to the comments of yourself and the others that have responded......follows me around, check. Cameras everywhere, check. Lose my patience and hate what is happening to my life, check. Food in the bedroom (and everywhere else), check. I know it doesn't make things better, but maybe knowing that there are a lot of us here that understand will help you just a little bit each day.
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Thank you Denise1847. I do know that it is nothing but the Grace of God and His strength along with His peace that I have not thrown in the towel. Thank you for that word "Keep your eyes on Me". I will be posting this on my chalk board.😊
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Thank you, and yes it does make me feel better, knowing that I am not on this journey alone and that a lot of people are in or have been where I am at now. So yes it is comforting. So, at the end of the day like now I can connect with you all on this site and in a sense I can also disconnect from all the happenings of the day. EXHALE!
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I have had the same feeling and then I start to get a handle on my feeling and thing are better, but for me I get control of my feeling and emotions, but only for a while then I am right back to the worst of times for a while. I think the worst of times emotionally become less often as time passes and I get better at accepting all this. The not knowing what is next is hard because every case is different, but the people here have been more helpful than they know. I don't post much but I read others posts and learn from their experiences. I don't know why but knowing that you're not alone in all this helps. I don't know if misery loves company or what.
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You touched on one of my fears. We are early in this process but I am only 53. I don’t want to have to give up my job and income. I am going to need it when this journey is over. I feel morbid saying that but it’s reality. DH is independent right now although the endless questions are exhausting. I work from home right now and pray I am not forced back into the office. Financially I am not looking at MC being an option for us. I also don’t want to spend the remainder of MY life in poverty. I just hate how the plans we have made for retirement are flying out the window ❤️🩹
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Hi PBS,
The constant struggle with emotions is part of our journey. One day you will think you have it together and then things turn, and fear sets in again. Counseling and an anti-depressant have helped me, but there are days when it is tough to get through. Take one day at a time (easier said than done), but the reality is that every journey is different. My faith has helped me to withstand these horrible circumstances through faith that God is good, He has a plan and all of this is temporary. I pray you have a good day of peace.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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