Help me send positive thoughts and prayers to Colleen

[Roger Bliss]

Thoughts and prayers going out to Colleen and her family. I hope things settle down for her.

She needs to hire some help or someone will be calling an ambulance on her. Her stress level has to be off the charts taking care of them 24/7.

[jen-cueva]

Hi, @Roger Bliss. I know Colleen will appreciate your thoughts and prayers. Poor girl, I agree her stress level has to be sky high, hopefully not her BP.

Because she is an only child, I don’t think she would hire someone to help. But maybe upon discharge, they will send out a social worker or case manager to find ways she can utilize help. With both parents dealing with some dementia, I know it isn’t easy to get Tyham to agree to any help.

When I checked in on her this morning, she said it still looks good that her mom is going home today. Also, her son Aidan arrives tomorrow. I mixed that up. But, like you all, I worry about our lovely Colleen. 🙏

[Colleen]

@Roger Bliss I was about to say, “I’m fine,” but that’s not entirely true. Caring for both parents does get really hard sometimes which is why when the hospital recommended a home health care nurse visit a few times a week for 30 minutes to an hour…I agreed! Mom isn’t happy about it but I need another set of eyes on her to help make decisions on how to best care for her. The nurse starts Friday and I’m hoping maybe when she meets my dad she can help me get added care for him as well.

Thank you for your concern. I appreciate it!

[jen-cueva]

Haha, @Colleen! I laughed when I read you were about to say, “I’m fine.” It seems we program ourselves to that answer, so it’s automatic. So, thanks for being vulnerable and sharing how it can be and is harder some days than others caring for your parents.

You’re not the only one guilty of this almost knee-jerk reaction.

[Colleen]

@jen-cueva But as you know, there are certain people you can’t fool and shouldn’t even try to. My friend Janet asked me on a bad day how I’m doing. I said, “Ok”. She messaged back, “I’m ok. Like just barely breathing? I’m ok. Because this is my new normal? I’m ok. Like there’s no other word that’s good to describe it?” Her words make me pause and ask myself, “Am I really ok?”. When we say that to others sometimes it’s more about trying to convince ourselves than them. And this has me thinking about a column if I ever get back into it.

[carol-volckmann]

Dearest Colleen, our prayers 🙏 and love ❤️ surround you along with emotional strenght as you go through taking care of your parents at the same time (I hope) taking time to take a break to help bring back some of your energy.

I also agree and hope your mom’s health plan includes some home care help – she could benefit from it and I am sure you could as well. Taking care of my father and Aunt both with dementia was very difficult, but with some help kept me strong enough to get through all the ups and downs.

So glad Aiden will be there also to help. Sending you 💓, positive energy, hope, faith along with many warm hugs 🤗. Be kind to yourself.

[jen-cueva]

Hi, my sweet PHriend, @Carol Volckmann; your words to Colleen overflow my heart with joy. She doesn’t realize how many love and care for her. She does the same when she can, and I hope she feels the love, positive energy, and prayers coming her way.

I’m grateful you were able to accept help and make it through caring for your dad and aunt, who both had dementia. When my grandmother was diagnosed with dementia, my mom initially thought she could handle everything on her while also caring for herself and my late stepfather. During one hospitalization, we discussed hospice care. At first, my mom wasn’t convinced, but after meeting with the nurse and aide to understand the extent of their help, she agreed to have them come several days per week. Although the assistance was valuable, she still felt she was fulfilling her promise to my late grandfather to care for her mom.

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Home health or hospice care can be challenging to introduce, especially for those hesitant to accept assistance. However, attitudes often change once patients and families get to know the caregivers. That’s why I always prioritized maintaining the same team for each patient, only having another nurse step in if I could not return for several days due to illness.💜

[Colleen]

Thank you @Carol Volckmann for cheering me up as you always do with your care and concern! I have accepted help. A home nurse begins on Friday and will come out 2 days a week for about an hour.

[V.R. Peterson]

@Colleen you’re in my thoughts and prayers. Please take care of yourself. Just like they tell us before taking off in a plane, you need to put on your own oxygen mask before you can help others with theirs.

[Colleen]

@V.R. Peterson your comparison to emergency response on a plane is spot on. I’m trying to do better at taking care of myself and getting rest when I’m able! How are you and your son doing?

[V.R. Peterson]

Thank you, Colleen and Jen. My son and I are healthy.

[jen-cueva]

Hi @V.R. Peterson, I’m happy to hear that you and your son are both doing well and feeling healthy. I pray this continues for you both. Do you have any plans this summer?

[V.R. Peterson]

@jen-cueva , now that hubs and I are retired, if we vacation at all, it’s during the off-season rather than the preferred season for everybody else. We prefer the lower prices of off-season and the streets with fewer people. It has the lower key feel that we prefer. I guess that’s one of the signs of getting older. 😉

[Colleen]

@V.R. Peterson I totally get it! As much as I love the Jersey shore during the summer I think I enjoy it even more in the Fall when kids are back in school and there are fewer people vacationing.

[jen-cueva]

Hi @V.R. Peterson, I guess I am already showing signs of getting older. Hehe

Last weekend, I told Manny it’s time for tons on vacation that crowd our beaches and surrounding area. Although you and your hubby aren’t retired, we enjoy the less chaotic and quieter seasons.

@Colleen , you sound like us, too. Less crowded seasons are also what we prefer at our beaches.

[Colleen]

Good to hear @V.R. Peterson . Cullen will board at college for the first time this Fall. I’ve mentioned before that he is adamant that he never wants to be in a relationship because of his health risks and not wanting to put someone through that worry. I think of your son and how he thought the same and is happily married now and hope that maybe, just maybe Cullen will find someone special while away at college. I will never pressure him but privately I hope he finds love some day and accepts it. Your son gives me hope that it can happen.

[jen-cueva]

Hi @Colleen, I also think it would be fantastic if Cullen could find that special someone while at college. It’s so encouraging to know that @V.R. Peterson ‘s son did! I’ll be in the background cheering for that for Cullen, too. 💜

[V.R. Peterson]

@Colleen , I’ll bet Cullen is excited to be boarding. It will be good for him. If the right woman ever comes along, all Cullen’s fears about putting someone through anything will fly out the window.

[Colleen]

@V.R. Peterson thank you! I will never pressure him by telling him what I am hoping for but it would make me happy to see him meet someone special.

[jen-cueva]

Well said, @V.R. Peterson ! That’s so true and a simple reminder. I hope you and your family are doing well. We’ve missed seeing you in the forums.

[Cody Hanson]

Sending good Thoughts and prayers from Utah! She has had a challenging time the last bit. @jen-cueva please let me know if I can help her in anyway. I can Door dash them something yoou can contact me directly. Just to know they are loved and people see how hard she works to take care of her family.

[Colleen]

You are so kind @Cody Hanson ! Thank you for your offer but mom is home now and life is returning to as normal as it’s going to get. Your kind words are all the nourishment I need!

[jen-cueva]

OMG, @Cody Hanson, that’s so generous and thoughtful. But I know our positive thoughts and prayers help see her through these many struggles. Colleen is such a blessing, not only to her family but to us all. She is one special lady!

Again, your words were touching, and you kindly offered to help her. Thank you for that, Cody!

[ky]

@Colleen Many thoughts and prayers your way beautiful! I hope you find time to check in with yourself and make sure you remember to breathe, eat, sleep etc.

I remember care giving for my mom and dad and at times it was extremely hard but I am so glad to have had that time with them, but there is no shame in getting assistance from home health nurses or other services and many are covered by Medicare.

Sending love and light my friend!

~Kyleen

[Colleen]

@ky I have finally accepted help! A home health care nurse starts Friday and will visit a few times a week for 30 minutes to an hour. I was happy to find out medicare covers it…something not everyone might be aware of. I was pleasantly surprised when I asked, “How much is this going to cost?”.

There are hard days but there are plenty of good moments in-between that I know I will always cherish. I will never regret the care I have provided them.

[jen-cueva]

Hi, @Colleen; again, I must tell you how incredibly proud I am that you accept this help. Yes, Medicare should cover so many visits. And then, if more are needed, the nurse would record your mom with her notes so another specific number of visits are covered.

This is how it was when I worked in nursing and with my late grandmother a few years ago. She also had dementia and had home healthcare for about two years before hospice care.

Despite the struggles, caring for our loved ones is rewarding and memorable, especially with help.

[Colleen]

@jen-cueva the home nurse case manage came today. It went well. She was very good with mom and gave me understanding glances whenever she would insist that she DOES NOT have dementia. For now a home nurse will come every Wednesday and PT will come 2 times a week, so 3 days a week I will have help with her if only for an hour.

[jen-cueva]

Hi, @Colleen. It sounds like the nurse visit went well. She also knows how to deal with your mom, telling her she doesn’t have dementia. The PT visits and the nurse coming each week offer several different sets of eyes on her, which also helps. PT will probably wear her out some, too.

Please remember to take care of yourself, my FWW and friend!💜🤗

Hopefully you spend time bonding with your new fur baby over the weekend.

[Colleen]

Thanks @jen-cueva the PT visit went very well. This nurse also bonded well with my mom. She is starting us off on easy chair exercises and she told me my dad can do them with us too.

[jen-cueva]

That’s such incredible news, @Colleen, that your mom also likes the PT who will be visiting. You and your parents must create your version of chair exercises for beginners. What a way to help them both gain some strength. Or, as I like to say, Move it or Lose it! They are so grateful for you, I’m sure.

Take time for self-care, my friend. 😍

[Colleen]

Thank you @jen-cueva and PHriends for your love and support. Mom was discharged Saturday evening but recovery has been slow. Anitbiotics were doing a number on her stomach and the hospital stay set her back in regard to her dementia.

On a positive note a club my dad belongs to had a big celebration for him on Sunday in which they renamed their building after him for over 50 years of membership and dedication. I was worried the day would overwhelm him but instead the socialization really seemed to give him a boost.

I had a wonderful visit with Aidan even though it was a short stay. He will return for a week at the end of August to help Cullen move into his dorm.

Again, thank you all for the prayers and kind words! They help me stay strong!

[jen-cueva]

Welcome back, @Colleen! It’s lovely to see you post an update. I’m sorry that your mom is slowly recovering. I’m grateful you have accepted some help from her.

Congrats to your dad, and I’m so happy to hear socialization gave him a much-needed boost! What an honor to name the building after him. Hopefully, you can get him out there to socialize every so often. Not only will it help him, but it will also do you good, too, to have that time with him.

It’s so cool that Aidan will be back in a few months to move Cullen into the dorms. I love that! And I am excited to hear about Cullen’s adventures in college there.

It’s our pleasure to support you, my friend and FWW! You help each of us with such grace; it’s the least we can do. We are always here, cheering, loving, and praying you. 💜

[carol-volckmann]

I am so relieved that you now have some help with a nurse coming in. From what I experienced dealing with the medical aspects were easier than dealing with dementia. My father became angry and paranoid – that was very difficult. At times when the anger would get out of control, I would firmly and directly confront him and tell him to stop! Most of tge time that would work as it would stop him in his tracts. Both with my father snd aunt I would tell the stories I had heard about their antics as children and they seemed to go there and we would laugh or at least feel the warmth as they would relate to some silly stories about each other. I remember my brothers would ask me why do I go and visit so often when I was in town as they did not recognize anybody – my answer, they can feel love even when they don’t recognize me. To me it was simple – simple but tough. Getting laughter back into their minds was the best like telling the the story of “snipe hutiing” with flash light and a burlap bag!!

Love and warm hugs Colleen we love and care for you so much 💖 💕 ❤️ 🤗

[jen-cueva]

Oh, my PHriend, @Carol Volckmann, I can only say that working on an Alzheimer unit, and would see this anger in many of my patients. But the simplest things, as you mention, brought them back down to a calmer mood.

Then again, when my late grandmother was diagnosed with dementia, I witnessed this same behavior with her. My mom and I were the only two to talk her into a laughing mood. But as you shared, talking about the old times and even days before I was born and the stories In grew up hearing from her siblings and mom. We usually laughed, but we got her to eat and take her medications.

Although frustrating and challenging, your sweet memories of your late father and aunt are heartwarming moments to cherish! Thank you for sharing, sweet lady!💜

[Germaine Norwood]

Hi Colleen, I was in Australia and just saw your notes. I am so sorry for everything you and your family have been through but relieved and happy that things are looking better. You and Jen are so loved by this support group and I will always keep you in my prayers and keep you as a cherished partner in our journey.

Best to you and family,

Germaine Norwood

[jen-cueva]

Hi, @Germaine Norwood. Thanks for your kind and thoughtful words. You and our other forum members make this forum such a special place to share our PH journey.

I hope things are good for you and your loved ones. Take care, my PHriend!

[Terese]

Colleen,

I, too am pleased that you got some help at home. I’ve been through that route as well with my Mom, and it helped once she thought SHE was HELPING the aide. At the time I was working full time, so it was really a blessing to have the help. Remember to take care of yourself, too. You can’t help anyone if you are sick or in the hospital yourself. Caregiving isn’t easy, we all all know, but knowing you did the best you could for your parents is its own reward. Blessings, my friend. And a big hug, too!

[jen-cueva]

Well said, @Terese Tuohey . Thank you for sharing your journey caring for your mom. I love how thinking she was helping the aide worked well for her.

But this part is powerful and reality- “Caregiving isn’t easy, we all all know, but knowing you did the best you could for your parents is its own reward.”

Have a wonderful Memorial Day weekend, my sweet PHriend. Hugs and love coming your way. 💜

[Joanne Sperando]

I take care of my mom, who also has dementia. She’s still very active but it’s definitely a challenge to be a patient AND a caregiver. Sending Colleen positive energy.

[jen-cueva]

Oh, @Joanne Sperando, your health has been more challenging lately. Does your mom live nearby? It’s so difficult not only physically but mentally. Take care of yourself, my PHriend.

[Colleen]

@Joanne Sperando I can’t imagine how challenging it is to be a patient and a caregiver, especially when dealing with dementia because every day seems to be different. I started feeling a bit run down yesterday and it has carried over to today. I can feel my arthritis flaring up and it makes me tired, so I can only imagine how tough it is for you. Please reach out any time you need the extra emotional support!

[Tracey]

@Colleen I cared for my mom for about 12 years. She had Parkinsons and at the end also had dementia, so I know exactly what you are going through., I really thought I had it together for about the first 5 years until my body told me differently. It really is so tough and I’m pleased you’re getting some home help. I really feel for you Colleen, I don’t think anyone understands the strain it puts on you if you haven’t experienced the situation first hand. Please take extra special care of yourself and don’t forget to have me time.

[Colleen]

@Tracey my friend, I feel like I haven’t touched base with you in forever! How are you? Did you read that I adopted a cat a few weeks ago? She is 3-5 years old. Got her from a shelter and her name is Maddie. She is something I did for myself! She is perfect and sometimes I think I need her more than she needs me!

I’m sorry you understand so well what I am going through. I am not at the real hard part yet. My parents still know who I am and for the most part, functional. It was such a struggle to get them to let me help them but they are starting to accept it.

I really hope you are doing well…or at least ok?

[jen-cueva]

It’s so wonderful to see you posting, @Tracey! We’ve been thinking about you girl! I am not excellent at my SM presence, but I am still working on that…. 🙃

Wow, twelve years of caring for your mom with Parkinson’s and eventually dementia is so commendable yet exhausting, as you know too well! As you share with @Colleen, making time for self-care is a priority! Colleen also knows this from being in this caregiver role multiple times. It’s rewarding when we know we are doing what we can as our parents begin to age and develop these conditions. But it’s much more powerful when we can accept some help.

🤗