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He had a seizure in June and has deteriorated…not incontinent but struggling in different areas. It’s 2 1/2 hours away. This is the lowest point in my life coupled with the hardest decision. I miss my best friend and have bouts of crying hoping I’ve made a good choice. Keep praying for a miracle.

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You did make a good choice and did what you had to do in order for your husband to get the care he needs. If homecare isn't an option for someone then they have to be placed in a care facility.
I understand how terrible and lonely it must be for you, but your life isn't over. Your husband will still be part of your life but in a different way now.
Joining a support group might be a great help to you. If there are none meeting in person in your area, even an online one can help.
This is a good group of people here too.
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I have experienced the same earlier this year. 61 years of marriage. My husband has been my life. For the last 6 years I have been going through the long good bye, as it is known. Grief along the way and then the grief of this is hard to handle. The main thing is that you have to constantly tell yourself this is the care that he needs and you could not give it 24/7. It is hard to believe right now, but the socialization that he will have in the home would be more then he would have otherwise. I found that to be true with my mother in the memory care home and now with my husband. Not the kind of socialization we are use to, but for those with dementia it is their new normal. As hard as it is for us, and it is, we have to accept the new normal for them and get into their world. Tears, sleepless nights, yes many. Because it is letting go. It is a long good bye that hurts so bad. Let the tears flow. Seek counseling within your faith or a social worker. There will be good times when you visit. I bring a huge cup of ice cream and feed it to him. I find things we can both laugh about. Like today when I put my could hands on him and tickled a little bit. I play music he likes and take his hands in mine and sway back and forth. As hard as it is, but will ease the pain in time for you, is get into his world. ❤️❤️
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I moved my husband into an AL/MC facility in August near my home. It seemed to be a good place, but once he was there, the MC director and the Nursing director were constantly calling me to complain about his dementia behaviors - wandering into others' rooms, etc. They wanted me to hire one on one 24/7 help on top of the $8K that I was paying them. I finally moved him out of there and into a facility that was just MC. It's further away but a wonderful place where their goal is to keep him until end of life. They never call me to complain and are always encouraging.
If you have found a good place, go for it, regardless of the distance away. You'll be glad you did. The tears will come, but it is because you are working through the stages of grief. I'm praying that God will be with you and give you comfort and wisdom.
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Pat1124 Dec 2021
Thanks for your insight, it’s exactly what I am scared of happening. Sorry for your first experience.. hard to understand when they supposedly work with dementia residents at a premium price and want you to pay for add-ons. My husband has his walking days but periodically reacts to TV or less frequently people with “they are Jack-asses and a variety of endings such as they are going to get pushed into the creek or get shot”. He now reacts to mirrors which I had to cover. No other inappropriate language or behaviors but I don’t know what tomorrow will bring. He can watch a variety of programs especially Disney with no issues. Just felt I may have been in the same boat as you at an AL/MC.
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Pat, I am so pleased by your approach to this difficult situation and that you accept the reality of it, although with a saddened heart. Thanks for sharing. I too, had to make that overwhelming decision to place my wife in MC. I had to question my motive. Did that mean I refused to care for her? Was I reneging on my vows? No. I decided that if I could find her an acceptable caring facility, one that could ensure her safety, manage her medications, and understand her illness better than I could, that, indeed, I WAS taking care of her. And you, too, Pat, are deeply and lovingly caring for your husband. You HAVE made the best choice. I'm pleased you found an acceptable facility, even though it's miles away. Continuing to do “the things I love and what we shared together”, and getting “your head and heart in sync”, are both proactive steps in the long journey to grief recovery. You'll do OK.

I hope you can find a support group either for grief or dementia. Sharing your story and listening to others will help ameliorate the inevitable feeling of loneliness.
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You stated "The MC is near a town we lived prior to retirement and area that I would return to in the future." Have you thought about making the move sooner so you would be closer to him?
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Pat1124 Dec 2021
Good point…have given that some thought and was torn but don’t want to make another momentous decision at this point. Selling your house, packing up, finding a new home is just too much at this juncture. Reminding myself it’s one step at a time Even though I lived in the MC area for 60 year, many friends have moved away and I’d be left with starting over again. Down here in lower DE, I have made many friends and have activities to keep me active. As I get older, it may be the wisest choice but that’s a future decision.
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I can relate to your difficult decision; safety and health for both you and your H are very important. Is your H aware of the move and accepting? My concern is that my H will feel I abandoned him; even when I leave the room for more than 5 minutes, he gets anxious. I know he will try to "escape" there and will be a handful. He knows me most of the time now; at some point, I will have to make the decision for MC; I only hope that by then he will not realize what is happening. Either way, it will be an excruciating decision (but necessary). I recall when I moved my mother to a Nursing home - she was understanding and knew that this day would come. However, I cried more than if she had passed away and did so every time I visited her as I left the building.
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Pat1124 Dec 2021
I share your pain… my husband appears to be aware and has said it’s what I need to do. Is he fully understanding, that’s hard to tell. He is usually very complacent. I’m hoping his sense of time is altered so he won’t perceive length of time between visits. Hoping to go every other week for several days. As you know behaviors ebb and flow, I didn’t want it to be an emergency placement. Most places have a waiting list, this MC had two residents pass away when I called so there was availability. I’d advise you to visit places, an elder attorney and try not to feel guilty(easier said).

A weird side story that some may look at askance at. My daughter consulted a psychic on zoom. Before they began, the woman said there was a strong presence that wanted to speak, a man in his late 60’s who said he’s your father. My daughter said my father is alive. She said he wanted to say how proud he was that you are a school psychologist and how he loved to watch you play soccer in high school. She related other things ..trips we took etc. He said I know everyone loves me and has done their best. He then said that he knew the time would come that he would need to go to a facility and he was alright with it. The psychic said it only happened once before with another dementia person. She said they are caught between two world. Believe or not, it gives me solace
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Pat1124: Imho, while a very difficult decision had to made by you, you made a STELLAR choice since you are a mortal being. Prayers sent for comfort.
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Thanks to all for the positive responses, loving comments and prayerful thoughts. I’m deeply thankful especially from all of you who are traveling on this journey. My prayers are with you as well.

The MC is near a town we lived prior to retirement and area that I would return to in the future. My daughter and brother are about 30 minutes away and we have friends living close by. The facilities closest to us are like glorified spa retreats with theaters and happy hours since they are AL/MC which needless to say he wouldn’t be taking advantage even though they said some MC do. The cost is reflective of that. The MC is still expensive but appears that the staff is well versed in the best practices in dementia care and do not dismiss residents if behaviors arise. This place provides the furniture if you prefer, new mattress and bedding etc. They will even decorate the room themed to your LO interests which leaves you to bring personal touches, clothes and whatever items are necessary for his transition.

I do believe I've tried my best. He goes to a top neurologist at University of Penn, we do weekly acupuncture/cupping sessions, he uses a photobiomodulation device, relaxation techniques and other ways to help him maintain his cognitive abilities He was keeping fairly even until the seizure. He had been going to adult daycare( after seizure) who loved him and was wonderful but he’s a walker and pushed someone in his way. They said it wasn’t aggressive but naturally he couldn’t continue.

We’ve been together 46 years, have a loving marriage, traveled extensively, shared the same career in education, and a fondness for history and artifacts.
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Fortunately, I have made many friends down here and have a lot of different interests that I pursue. In my heart, I know he would want me to do the things I love and what we shared together.

Through Penn, they have a grief yoga that I plan to participate on through zoom and may look into a therapist to work through these feelings. We had contacted a elder lawyer about 2 years ago so POA and Advance directives etc are all in order

As so many of you elegantly mentioned, it’s getting my head and heart in sync…..giving myself time to mourn…learning to live the new normal and finally, hopefully emerging a stronger person in the process. Thanks for reminding me that I can do this!

I would love to look into creating a nonprofit to assist people who don’t qualify for Medicaid to defray some of the cost of care at home or a facility, or to help pay for supplies Depends, ensure etc. This is not in my wheelhouse but we will see.
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Grandma1954 Dec 2021
Pat1124, I told the Hospice team that we had that I was “ruled” by 2 major organs. My head and my heart. My only hope was that when time came to make tough decisions the correct organ would make the decisions.

As to your nonprofit, there are resources out there it is a matter of finding them. Once found the difficulty is getting people to 1) Ask for help and 2) Accept help.
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I'm so sorry that you had to make this difficult decision, and for the loss of the close relationship. Is his mind still good? Try to visit him as often as you can. Show him your love. It's difficult when his facility is so far from you. Can you find a place that's closer, so that you can visit more frequently?
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You are grieving the loss of the old relationship with your husband; and you are taxed with a huge decision, but you are making this decision out of your love for him. I'm assuming there's no suitable place closer to you, so could you relocate to be closer to his facility? If not, you will find a way to deal with that 2+ hrs trip. It's a massive disruption for both of you, but part of life. You can do this; lean into your faith that a way will be found if/when you accept this is a new stage of life for both of you. Crying is cathartic, a way to relieve stress and acknowledge your feelings. The miracle is when you accept the new chapter and allow your Creativity to fashion a solution for both of you. You may benefit from consulting a therapist, a trusted friend, a social worker to help you understand your experience is normal, and just requires embracing your 'new normal.'
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Pat,
praying that you experience God's strength, comfort, and peace; and that your husband receives total healing.
In Jesus Name,
Amen
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I feel for you....I know it is coming and some days I say it is time and other days he seems better and then I say 'oh he is not ready' for a special place. He is now 68 but has had early onset ALZ for 9 yrs now. The incontinence has started, he cut his finger yesterday while I was upstairs and I came down with blood in kitchen but thankfully he was alright. His family does not even check on him so
they are no help and he will fight the decision. He relies faithfully on our dog, Puddles to be with him. I get about 4 hrs a week away and I just pray God gives me the strength and has this under control. I pray for everyone going through this nightmare.
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I’m so very sorry for what your going through. That decision hasn’t arrived yet for me and my husband, but it will.

You are making the right decision…If you can no longer care for your husband, the only choice is a care center. If the closest/most cost effective is 2 1/2 hrs away, so be it.

Do you have a support system in place…friends, family, online, phone…anything and everything so you can vent and not feel so alone? Listening to others share their stories. Offering others empathy, sympathy and whatever help you can will also help you during this time. Crying is fine. Cry till you have nothing left. Who wouldn’t? But after you’re done crying, stay occupied.

Make plans for your future. I don’t mean to sound trite, but stay busy, don’t just sit and dwell. Yes, you will cry off and on. Probably for some time.

Go out with friends or stay in and deep clean, reorganize. Not sure how fit you are…exercise, walk, heck repaint a room. I know you think hearing BS like this is so not helpful, but really, find something you enjoy to do, it will help. Have people over to keep you company during this transition. Do you work? Maybe consider a part time job or volunteer work after you get your husband settled. I imagine getting your husband situated will take some time. When you drive to see him, listen to music, podcasts or audiobooks you enjoy. Stop and have a bite to eat at someplace you like. I know…eating alone sucks, find whatever small positive you can, pick a restaurant you want, take as long or as little time as you want, eat dessert first if you want. All these things are small and silly, yet it’s all these little things that add up. Or maybe friends or family can join you sometime for the ride.

The first few visits (esp the goodbyes) will be tough. Take some time before you get back on the road to cry. Stay safe.

You are making the right choice, please know that. Your best friend needs proper care. Stay strong, you are not alone. People have to make these difficult decisions all the time. If others can get through it, so can you. I wish I knew how to make it easier, but there just isn’t any easy way.

If your husband could advise you, what would he say? Lay down and cry until you die or do the best you can to make your life happy?

This period is a rough one for sure. Do the best you can. You aren’t alone.
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Pat, please ignore this post. This poster is obviously a trouble making troll that has never done one day of caregiving and doesn't know crap about facilities.

They only post to make people feel guilty and hurt them.
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Yiu should reconsider.
I wouldn't put my worst enemy in a Nursing Home.
They are horrible!
They are all understaffed!
Your husband will be totally miserable, sad, with feelings of being dumped, unloved and scared being in a strange cold place . Please Pray about this and try to work it out where he can live and die peacefully in his own home.

If he's been in the Service, you can qualify for up to 30 Caregiver hrs.

You could ask for Home Health where you can get an Aide to help with bathing and a Nurse to come by to check him.

All Nursing Homes are Businesses and they tell you what you want to hear but 1st hand experience, they are definitely not what they present.

Prayers
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Grandma1954 Dec 2021
I do not know what experiences you have had but not all Nursing Homes, more accurately now called Skilled Nursing facilities have been but I think you are way off base.
And Pat1124 is not talking about a Nursing Home but Memory Care. Totally different than a SNF.
When someone reaches the point where they have to consider Memory Care it is usually based on a a very long hard thought out decision. Most likely based on SAFETY either safety of the person that is being cared for or the one giving the care.
That safety could be Physical, Mental, Emotional for either. Or for the rest of the family.
Please do not add any more "guilt" to what is a very tough decision to begin with.
If you have valid information about a particular place report it. But please do not paint with broad brush strokes every SNF, MC or AL.

getting down off my soapbox now....
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I’m so sorry. I’m in the same exact boat. Waiting now for a date to place and I feel the same as you. My health is also now at risk and I’m crying all the time. Hang in there. We are making these choices out of love for our husbands. They need to be safe and we’ll cared for. My husband now needs a level of care I can not provide to him at home. I adore him and I will be by his side at the facility as his wife and advocate . Hugs to you. Be proud of how much love you are giving to him💜
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I went through this in February, almost identical situation. We've been married 43 years. My friend, my husband, my love, still knows me and our children and doesn't understand why he's there. Heartbreaking. Its the hardest decision I've ever had to make. Uncontrollable grief and sadness, I'll never be the same.
Finding a support group really helps, and supportive friends and family is a must. It'll get easier with time, I promise❤
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Please connect with an in-person dementia support group near where you live. You are truly grieving and need friends around you who have been through - or are going through - similar situations and feelings.

I am glad you have made a decision for your husband to get quality care. I am sorry that his MC is farther away than you would like. Sending air hugs and prayers that you will find friends nearby to love you through this.
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YES, you made the good choice. As much as you think you are wonderwoman and superman in a single body, you cannot do this. (Voice of experience.) As selfish as it may seem-and I know it does-you must place yourself before them. Without you they have nothing.

What makes this difficult is that they look like the person you love, but the DONT ACT LIKE IT. That is because their mind is deteriorated. I, and the people on this board know how difficult this decision is. You are scared for them and you are scared for your finances. You will always question your decision, right up to the day they pass away. But yes, you are doing the right thing.
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A friend of ours moved into the assisted living facility with her husband and when he needed memory care, he moved to MC and she stayed in the apartment of assisted living. She was able to be close to him and have her car and independence.
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I’m in the same boat with the same feelings of sadness. My husband is 72 and struggling greatly. Incontinent of urine but has forgotten so many basic things. He’s the love of my life and high school sweetheart and I know in my heart I’m placing him out of love for him and to keep us both safe. We are not safe right now. While dressing him 2 weeks ago I was bending over to get his pants leg on and he fell forward on me and I injured my back. I was useing a walker for a week. If we get sick or injured we are no good to them. Placing them is a “ loving choice”. Hugs to you💜💜
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So sorry you have to make this decision but Caregiving alone is hard.

I would suggest you see an elder lawyer concerning your finances. Medicaid allows you to to split your assets. Your husbands split would be spent down and then Medicaid applied for. Medicaid does not pay for Memory care usually only a LTC facility. By the time that happens, your husband may be passed what MC is capable of anyway. Once on Medicaid you become the Community Spouse. You remain in the home, get one car and get part or all of the SS and/or pension u bring in together to live on.

You need to protect ur future.
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I wish we could all give you a big hug. This is a difficult decision and a lot of people, who have no say in the matter, will be critical of your action. But it is really the best thing to do for your husband.

Consider that now he will get care and supervision by staff who are not exhausted by being on duty 24/7. He will have access to on-site medical care, administration of medications, prepared meals, etc. And most important of all is the socialization of other people, not just you. Plus planned activities to engage his mind and body.

Best of all will be that you can now visit him and be there for him, not tired and worn out with caring for him. Have you considered what would happen to your husband if you became ill? Your first role here is to make sure you are in good mental and physical health, then you will be better prepared to oversee your husbands care.
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While this is a very hard situation, I'm sure you did not take this decision lightly and therefore have done it with his best interests in mind. And yours too. Caretaking 24/7 is such a strain on a person. You deserve to be able to sleep and have a life too. A change like this will bring about a new level of grief that you are dealing with. Best of luck.
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I'm sorry you're in such a position, to be experiencing such a loss. I'm sure it doesn't feel as if you've made a good choice, but given the circumstances, placing your DH in a Memory Care AL is the best thing you can do. When I worked in a Memory Care AL as a front desk receptionist, I got to meet a lot of wives who had no other choice but to place their spouse in our care; they'd come frequently to visit and to take their husband out to lunch or for ice cream, and it worked out well. It may be hard at first, while both of you adjust, but in time, things should smooth out some. I hope so.

Wishing you the best of luck with a difficult situation.
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I am very sorry for your situation. I have no idea what else to say except that it is perfectly OK to be sad. Grief will come in waves, but in time, will become less raw. (((Hugs))) to you.
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I'm so sorry Pat.
You have done a loving thing. I hope you can see that, but the separation must be so hard.
There are many spouses over at the Alzheimer's org. that have had to do this--some have done so quite recently, some are getting ready to take this tremendous step. They would surely be happy to support you in addition to the kind folks here.
https://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438
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