DW Otherwise Healthy in stage 7 & can I have a life?

Crushed

DW is 68.  I see her 5 days a week on Face Time.  She has absolutely no coherent speech and  does not recognize me in any way or respond to her name.  She has no skills and does not recognize a cookie on a plate. She clearly likes her personal caretaker, is happy taking showers, has to be hand fed everything, weighs 118 pounds, walks smoothly if aimlessly, has no other illnesses, looks lovely.   She is even tempered , has seroquel  (rarely) for evening restlessness.  She falls occasionally , but it appears that she simply tries to sit in a chair which is not there.   I supply Ensure, brownies, Yogurt, key lime pie, Turkey pot pie and blueberry pie.    

I  have had to accept that we are not "married" in any meaningful way. She is instead my "responsibility", but one I take very seriously.  Next week I get my first Social Security check on my own account rather than as a spouse.  It just  emphasizes the "aloneness" 

Her care is expensive and clearly could go on for a very long time. Her pensions and Social security pay about 2/3 of the cost, and withdrawals from her IRA pays the rest. She will not "run out of money" .  
I do have vaccination appointments scheduled for me for February and March.  She has had her first.  I have 600,000 United miles, lifetime gold membership and $4000 in United flight credits due to Covid cancellation. But the world is infected and locked down.

Looking for a life

littleme

I am at the same stage. Have just written  a memoir. Certainly occupies the mind  and fills any spare  time.  Highly recommended. 

David J

Crushed-

Things will change. Covid will be controlled and life in general will move back towards pre-Covid norms. I think the world is permanently changed, but we will all learn to live with it. You can use those miles eventually. 

I can imagine having your DW in MC is like purgatory. Not hell, but not heaven either. I know when I take that next step, I will feel even more isolated and alone than I do now. I am counting on the indomitable human spirit to keep lifting me up and keep me going. I believe that most people want to be happy and will find their inner peace and happiness regardless of the situation.  

It is good that she can afford to be in MC. Many here can’t, adding to the stress and affecting their long-term financial health. It sounds like you have that aspect of her care nailed down.

We all need a new life, but are afraid of what it will be.  Hang in there.

Rescue mom

My DH is not quite as far along as your DW— he still recognizes me, and can find his way to the bathroom at home, but nothing else—and I often wonder if between him and COVID restrictions, will I live long enough, healthy enough, to have a life (which I don’t consider that I do now).

Mike&BrendaTX

Crushed,

You will eventually have a life again. You are doing the right thing by being there for her, visiting and supplying her favorite foods. You never know when that day will be the last one to see her.

I lost Brenda about 13 months ago. She was in Hospice (Stage 7) for 3 and a half years and in an Alzheimer's Special Care Center (MC) for the last two months.  At Christmas, she was happy, knew me and her kids, and seemed to be going along fine.  About two weeks later she was gone.  A lady at the MC whose daughter and I talked often was walking purposefully around the center one day, gone the next.  You never know with this terrible disease.

After some grief therapy, I decided to go on with my life.  This past year I met someone wonderful and we married.  At 75, I feel like I'm 30.  I'm sure the same will happen for you.

Mike

Donr

Me and my DW got our second shots yesterday at Cleveland Clinic. I refuse to let Covid destroy what time I have left.

amicrazytoo

(((hugs)))

ElaineD

Dear Crushed,

I don't know anyone with a 'normal life' right now, due to Covid restrictions on everything from eating out to travel abroad.

We're all impatient and frustrated, to say the least.

However, I'm lucky to live in a Senior Living Residence, so I do have some socializing (playing bridge, very 'careful' social events) and we have our second Moderna vaccination next week!  Slowly life will return to normal, or a 'new normal' anyway.

Hang in there.  

Elaine

JM1316

Crushed,

My DH is not even near the level your DW is at and I have been thinking the same thoughts.  I am a planner and constantly wonder when I will be able to “live” again too.  I am looking at 7-10 years out and I feel this disease has robbed us both of our retirement years!

jfkoc

The "aloneness"  has certainly compounded due to this darn* virus... as if there was not enough "aloneness" from not having our loved one with us whether due to placement or death. 

I simply have no idea as to how to have much of a life due to the solidarity we are forced into. People need people...we need to touch and to hug.

Last weekend was the first time I had hugged someone in almost a year. I broke down in tears. This morning I got my second shot and again cried....tears for the saddness of the whole mess, tears that I was on the way to a better life and tears that we all were headed toward living with people again.

Crushed, you are indeed positioned for a rebirth with all of those resources just waiting for you. "Oh, the places you will go"! Bet the first place will be where you can hold your grandchildren close.

We must hold on...there is light at the end of the tunnel. God willing, the tunnel is not long.

Sadlady

I am very new to this and in fact have only written once. However I have been reading all of your messages for the past month and I cannot thank each of you enough for  your help. I finally feel "understood"! Your issues are mine! I am not the only one experiencing these things. You cannot possibly know how much  you have each helped me, and so many of your suggestions I would never have thought about. Thanks sincerely.

Laurention

I lost my  DW  January 8... DW was four weeks shy of her 65th Birthday. Yesterday marked four years since I placed her in LTC.

I do now know the meaning of grieving twice.

It's mid February , and up here in the frozen north the sun is higher in the sky. The days are getting longer. DW born and raised French Canadian hated winter. Around this time she would say .".Let's book some vacation time and head south for a bit. By the time we get home spring is around the corner." 

Crushed ...As you well  know there is absolutely no way to predict the route that Alz. will follow. I will tell you Sir ...there is a life after. Maybe not the same life ?? Just a new one.

For the first week or so I found myself reaching for the phone to call the LTC.. The pain and the memories  will never go away.  Time does heal all wounds. 

  Mike

BTW a little off topic here. I see on the news  our American friends are getting the vaccine. Up here with our "oh so wonderful  Health care  system " The government has totally dropped the ball. ..I'm 67 and in fairly good health I don't expect to see the vaccine until July or later !

Happy Presidents day !!

Stuck in the middle

You have a life now.  Tina Turner was asked about her plans on her 80th birthday, and she said she didn't know if she had 20 years or 20 minutes, but she planned to live them.  Sounds like good advice to me.

Crushed

Laurention wrote:

I

BTW a little off topic here. I see on the news  our American friends are getting the vaccine. Up here with our "oh so wonderful  Health care  system " The government has totally dropped the ball. ..I'm 67 and in fairly good health I don't expect to see the vaccine until July or later !

Happy Presidents day !!

Has absolutely nothing to do with the "health care system"  Canada does not produce vaccines  It has to compete in a tough marketplace to buy them .  Both Europe and Trump threatened export controls.  
https://www.reuters.com/article/us-health-coronavirus-canada-vaccine/canada-confident-in-vaccine-deliveries-even-if-u-s-blocks-exports-idUSKBN28I2GJ

 
https://www.express.co.uk/news/politics/1397466/eu-vaccine-news-Canada-moderna-eu-export-ban-latest


https://voxeu.org/content/export-controls-covid-19-vaccines-has-eu-opened-pandora-s-box

MPSunshine

Hey Crushed, I read so much despair in your passage. I think you will figure it out. I understand it's a difficult path and who knows what the meaning in life is anyway. Sometimes it's just in the plodding forward and continuing even when it doesn't make complete sense. 

A daughter,

MPSunshine

Jo C.

You do indeed have a life.  Not to make light of your feelings and losses which are very real; just a little looking at perspective:

Gratefulness for so much is something to consider.   Dear wife though taken in disease that cannot be controlled is being well cared for in a very fine private pay facility.  No financial worries; care at that high level will be paid for as long as it is needed out of her own retirement pensions and her investments as you say, that will not run out; you are spared that worry.  She is loved by you and by family.  She is reasonably content.

Despite your deep long term loss and feelings of loneliness, you have a roof over your head, food in the cupboard, health insurance, a generously stable financial situation; successful adult children nearby who care and love you, beautiful grandchildren, and so much more.

You have been blessed to have been able to experience SO much in your life; to have experienced a great love, and to have traveled so much, far and wide; imagine how much you have been given/received/earned during your years.  That is wonderful to have had such experiences and the love of an amazing woman in marriage; many never, ever have that.  Gratefulness. 

We are all stuck in the pandemic isolation and losing or have lost a beloved, and it truly is a sad, hurtful, lonely state of affairs; however, there are many in the midst of that ongoing loss who are also stuck in this pandemic situation who have lost homes, or do not have one and cannot afford rent; who have no financial stability, no food in the cupboard, no job, loss of a business, no health insurance, etc. Some in this situation have children or other dependents to care for under dire circumstances.

The existential matters are there and very real and they hurt, the loneliness and losses are deep.  As said, I am deeply sorry for the hurt you are experiencing.  Yet I have found it is a good thing to count blessings large and small, past and present, and to be grateful; there is so much to be thankful for.

Counting blessings is a very positive thing. It takes us out of ourselves and helps to restore a bit of perspective. 

Your loss of your wife to dementia is a horrible loss; we understand and none of that was controllable;  you have done your very best. While it does not mend the broken heart, nor fill the loneliness, it is a situation which despite its seriousness and often bleakness that is too dark to show us the future, yet, it holds blessings to be counted.  So many have come to share with us that there is light to be found again, that we will find our way again; their path has been longer and they have experienced all that and more.

No Pollyanna here; just an individual who learned to remember to be grateful.

J.