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 .
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.
So--your DH is in an ALF a distance from where you live? So, daily visits are not possible? You certainly could move to where he is, but do you want to uproot your whole life for that? What is DH's prognosis? And how 'bad' is he? Would he even remember your visits and such?
You are calmer now, and more able to make decisions. People with dementia don't get better. The slide downward is awful (as you well know) and can be quick, or slow and steady. You already know you can't care for your DH at home and he is where he needs to be, for both your sake's.
Sit down and write out all the pros and cons of decisions you might make. Weigh them out. Take your time, as this is a HUGE decision.
Maybe after you have visited with your DH at the ALF you will have some clarity as to what you should do.
((hugs)) I know this is hard.
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.
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.
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.
As you know dementia is progressive and it gets worse.
The same for my husband, no dementia but Parkinson which usually progresses slowly for 20+ years.
So I know it is possible:
A. I am going to take care of him in my 50s, 60s and potentially 70s.
B. Some event or disease will end it.
C. If dementia happens and mobility issues become worse and he requires wheelchair he will go to facility. I know I will not be able to take care of him.
None of above is acceptable or easy. Yet, I must accept it.
Couples we are friends with find it hard to be around us. Understandable as my husband is often in pain, tired, he loses his voice, people have trouble understanding him.
I feel his frustration and pain. He is well informed and eloquent man yet his soft hardly audible voice pushes people away. We spent as usual winter in warmer climate and sadly I am sure this was our last trip, he is great traveler, no complains, but everything is too hard for him.
But I would go and dance on the beach till wee hours.
I cannot see doing this forever yet I cannot imagine any other outcome either.
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.
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.
It may help you to read how others feel about it but in the end it’s up to you to decide what suits your needs best.
There is no easy solution for these situations. All I can say is that I wish you peace as you navigate through this difficult situation.
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
They cannot be fixed or cured from this horrible disease.
When you have a best friend/spouse with you so long, that suddenly changes into a basic stranger needing 24/7 care, of course you want the husband you had back. Of course you would miss him, as well as your life you had before all this happened.
Watching my incredible second husband slowly die from Stage 4 cancer destroyed my life, hopes and dreams. I had to be brave and worried constantly. I had to work, to pay for his treatment. I had to stay strong, keep my head on straight, and focus on getting us both through it. I was lonely all the times he spent in the hospital.
It's great he is adjusting. Now you can be his wife again. Make this time matter as best you can. I wish you peace in your heart.
I can’t imagine going through what you did. My heart goes out to you.
No one knows how they will feel in these stressful situations until we experience it for ourselves.
It is amazing what the human spirit can endure during the worst times of their lives.
I nearly fell apart just hearing my husband tell me that he had prostate cancer and would be undergoing treatment. Fortunately, he caught it early.
I hope that I could be as brave as you if I ever face what you did.
I have always said that I want to die before my husband so that I wouldn’t have to watch him die.
I struggle with saying goodbye to someone that I love.
I know that it would be unbearable to say goodbye to my husband. I don’t think my grief would ever end losing him.
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’re always going to love her. I feel this way about my husband. I never want to say goodbye to him because I feel like I would grieve forever.
You were a blessing in your wife’s life.
You need support and other activities to keep your spirits up. Join a walking group. Join a support group. Meet girlfriends for coffee once a week. You're going to have to make an effort to look for the joy in things because the sadness and stress of dealing with a loved one who is sick can really suck the life out of you if you let it. Find a book that interests you and start reading it aloud to him. Play music during your visits. If possible and weather permits, push him in a wheelchair outside to get some fresh air.
The man you married physically and mentally is different and in gone. I'm sorry, I know that is difficult to hear, but it goes from a typical relationship to caregiver/patient. You said you could live in the town where he is. Would you be okay to do that mentally? Is it far from where you currently are? If you can stay where you are and it is not really far away to visit, it might be better. Moving can be so, so hard and you don't want to be tempted to take him back home to care for him. As much as you love him, it will mentally and physically drain you to try.
This is a very difficult time, however, a time for transition. He is giving you some time to transition to a different way of life. I suggest that you begin to find some activities that allow you to visit with your husband, while also allow you to carve a new routine for yourself.
It is a very lonely time. What did you do in your past life? Can you find an opportunity, unpaid or paid, that allows you to do that now maybe a few hours a week? Start searching now so that you can find something that fits you. How about volunteering for an alzheimer's group? How about volunteering with a literacy group? In the early stages, I thought I wanted to volunteer with the Humane Society, however they wanted a commitment of time, and I couldn't commit.
Remember, the "healthier" you are, the better you will be able to care for your husband. Think of yourself as a manager of his care.
Its time to re-invent yourself again, and prepare for the future while still working with the present.
Don't get depressed. You cannot give the best care to your husband while being depressed.
((HUGS))