My husband ( 20 years my senior) is in respite care while I take a mental break . Now that my mind is a bit more calm and settled, I’m finding that I am terribly lonely . And that I really don’t want to live without my husband . He is adjusting to the assisted living in the facility . I’m going to see him tomorrow ( after 2 weeks). I want to care for him because I love and miss him but it’s been wrecking my life . I dont know if it’s worse to watch him slowly die in a facility or to try to establish a brand new life in the hometown where he is in the facility .
So your life may not get "better" but
Your life will be different. It is already taking care of someone with dementia isn't it?
But your life got different when you met him, when you married him.
Sometimes taking care of someone means that you have to let someone else take care of that person.
If you were to place him permanently in Memory Care where it sounds like he is adjusting well..(great for both of you) you can then return to being a loving wife and NOT the primary caregiver. Yes you will still be a caregiver, you will also be a care manager.
To turn your phrase back...is it worse to watch him slowly die in a facility or to watch him slowly die at home? Or watch him establish a new life in a facility without you.
That is difficult.
You need to find YOU in all this.
You need to establish a new focus.
You need to reconnect with friends that have stopped calling you and asking if you want to grab lunch because you could never leave. Or you had other things to get done when you could get away.
Start Volunteering at something you like doing. Maybe 1 or 2 days a week.
Take some time for yourself.
A friend of mine at the Support Group that I now co facilitate called her self a Married Widow and I think the term fits perfectly.
(((hugs)))
My wonderful husband has PPA caused by FTD (like Bruce Willis). I thought I could do this at home all by myself. He’s non violent, sleeps all the time, etc. But, he is slowly deteriorating into a zombie who doesn’t understand me anymore. He was diagnosed 3 years ago, but, we can trace it back 6-7 years. It’s a nightmare. We have Palliative Care and specialists and they all agree with me that I’m burned out and he’s got to go to Skilled care. They’ve been working every day to find the perfect place that I will feel comfortable knowing he’s in good hands. They said don’t wait until a crisis - then, they’ll place him in whatever is available. This is so expensive that it’s mind boggling. He moves in a week.
I’m terrified of being in this big house alone after 48 years with my best friend and the man who “gets” me. He’s a shell of who I married. And it’s progressing rapidly. Now, he can hardly walk. He has Parkinsonian symptoms which were expected. FTD is insidious.
I will be there all the time - it’s 5 minutes away! I am 2nd guessing myself every night. I keep saying I can do this - but, I can’t. I’m losing myself in this journey. The social workers and nurses tell me our relationship will be better once the stress is removed 24/7.
BTW, I am 70 and he’s 76. I just pray he adjusts well. I will still be a “married widow” but I don’t want to see this happening under my nose every day all day. I may go back to volunteering at our local cancer center like I did before his diagnosis.
Everyone here has such good advice and it’s so helpful.
It is heart wrenching to watch the person you love slowly wither away. I know. My late husband was 12 years older than I and after having a massive stroke early in our marriage, ended up with vascular dementia which lead to his death in 2020.
I was able to keep my late husband in our home till his death, but I will be honest with you, it was very hard on me, but now in retrospect, I'm glad that I was able to do that for him.
But only you know what you can handle and what you can't, and there are no right or wrong answers, only what is best for the 2 of you.
I wouldn't be making any major changes or moves in your life right now, but perhaps just look for little things to do that bring you joy.
That can be just going to lunch or supper with friends, going to the gym to exercise, or taking a walk around your neighborhood. You can also take up some volunteer work as helping others always helps us feel better.
It's best now to try and establish some outside relationships with other women, so that when your husband does die, you will not be so lonely.
You can also see if your city has any in person caregiver support groups for you to attend.
My local support group was a life saver for me while I was caring for my husband, and let me know that I wasn't alone in what I was going through.
My husband has been dead for 3 1/2 years now, and I can tell you that life does go on, and it does get better.
Do I still miss him? Of course, I always will. But I now stay busy volunteering at several different charitable organizations and at my church, and am enjoying my new found freedom of only having to look after myself, and being able to do what I want, when I want and if I want.
So hang in there. This journey won't be easy, but you're going to make it and be a stronger, better person when it's all said and done.
God bless you.
BUT, you have for years made this man your very life. Every second of your life. You are totally enmeshed with him and with his every waking and sleeping need.
It isn't going to be easy to break the cycle of this.
Whether you watch him slowly die in a facility or not, you are going to watch him slowly die.
You are suggesting that without him (and without watching this slow death) you have nothing, and I know that is how you feel now. And the sad truth is that it will come to the point that, no matter your "relative youth" you are not going to be wife, but full time caregiver, and could die of that before him.
My suggestion is that you face this. There is little choice. Place your husband. Visit. If you find you are lost and lonely find a way to volunteer there. I have seen a friend do this with her mother. Slowly find support whether in your faith-based community if you have one, or a grieving and support group, or whether online on Facebook or other social media. Slowly branch out. Our library has volunteers, has movie night, has craft classes. What about yours? Take up sewing, knitting, something else. Painting, puzzles, podcasts. Begin with filling the time whether an herb garden or african violets. And visit.
I am sorry. There's no way out of this but through it the best way you can.
I hope you will update us about your decision.
You can be his advocate and ake sure he is being well cared for.
Have you ever looked into assisted living where the two of you could still live together? There are such places. You would get the help you need with him and you'd still be together. There are even ones that allow for a higher level of care when it's needed, right on the premesis.
You have choices. If you live alone consider getting a roommate. Share expenses and you wouldn't be alone.
Why is your husband in a facility that's not where you live? You're his wife.
I don't know how old you are, but I'm 50 and I'm too old to pack it all in and set down roots in another place. I did that in three different states and it was a great adventure for sure, but I'm too old for it now. So think about what you'd be getting yourself into.
Start letting yourself have a bit of a life. What did you like to do before caregiving became most of your life?
Did you work? Or take classes? Did you enjoy cooking, painting, entertaining?
Try to remember the woman you were before caregiving and get to know her again beause she was probably fascinating.
There isva point where you can place them too late. Harder to adjust. The earlier he gets used to the AL the more likely he will except itcas his home. You can visit and have a life doing things with friends. Maybe get a job if u don't already have one. If you have him stay at the AL then see an elder lawyer to split ur assets. His split will be used for his care.
I hate correcting people on this splitting assets comment, but, I’ve been through so many meetings between myself/husband and my MIL/FIL and you can’t just split your assets down the middle. Wish you could, thought you could, it’s not fair especially when it’s inherited money on one side, etc. etc. Fact is: you have to pay for care until you’re down to $148,000 (as a spouse only) and, then apply for Medicaid. You won’t lose your house or car.
However, he’s become so volatile that home care can no longer provide us with in-home services. As a result of this decision, they are going to assess him for potential placement. To hear your husband has adapted so well has brightened my outlook.
Good luck with everything. Each new stage is stomach-gnawing for us caregivers. Please do let us know how you are managing.
Caring for a loved one with Dementia is not for the faint of heart...But a girl's gotta get out. Join a swim club, walking club, join a book club, have the Church people visit.
If you don't do this things your associations will be CVS drive-thru, the lab tech and appointment scheduler at the primary care doctor's.
Just bought some tulips from the supermarket for me and these little things like a chocolate bar come in handy too. It's a long goodbye this beast of a disease and it's like running a marathon, we all have to make it to the finish line, still standing!
Amen...Happy Easter!
You likely are exhausted, grieving, and depressed.
Your question asks for 'hope' "Does life get better ..."
I believe the answer is - or depends - on what you do.
You could continue on a downward spiral or you could reach out for support and make a decision to live.
I tend to believe that in some situations - if not most - life 'gets better' when we accept what is vs fighting realty. In other words, be PRESENT in your life and take a moment at a time.
Often 'getting better' is believing it will ... having hope ... and the tenancity to move / push through while acknowleding. the pain / grief you are in. It isn't a matter of pushing your pain away, it is a matter of being willing to feel through feelings, which is - to me - a way of honoring your husband and the love you feel for him.
Consider what your husband would want for you.
I believe he would want you to enjoy your life, not give up. Don't you?
I recall when my friend-companion said to me "I want you to take care of yourself." I think of his words often when I am depleted and may make decisions that are less than taking care of myself. His words though ring in my head - are an inspiration to 'push through and 'keep going' when it feels hard.
Wrecking your life is an interesting choice of wording.
I imagine that 'this' life you are now experiencing feels unmanageable - you saying you do not want to live. I believe you DO want to live and want to find a way to do that, which is why you are reaching out to us here.
If I was in your situation, I would reframe this thought somehow ... perhaps
"I need support now.
Life is overwhelming.
I am grief stricken. I am so sad. "
Then reach out to a professional - group therapy AND / OR find an association that supports spouses.
Hang on for the life you want for yourself as this is the life your husband would want for you. If you need to lean on him now, do it for him. Take steps to find the light, walk in the healing light. It is there waiting for you.
Gena / Touch Matters
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